Kellysavedbygrace

Oh, also, if you do have the procedure you may want to take a dose of H1 and H2 blockers as a precaution against the release of a histamines.

Are they impacted? Or is there a chance of that? If so then you should probably consider having that done and not put off. I'd make sure the oral surgeon is aware of your case and precautions in using anesthetics in your case. There is a whole chapter in the medical text, "a primer of the Autonomic Nervous System." written by Robertson, et al. Published nov 2011 Here is an article you could share. It's a bit dated but still some good info. http://www.dynakids.org/Documents/Brooks_April_2006_JADA.pdf

He does not do testing. For diagnostics go to a major med Ctr such as Vanderbilt, Mayo, MN or Cleveland Clinic, OH. He is Outstanding in treatment. I took my recommendations from CC and Vanderbilt to Randy for review. I follow w him every 3-6 MOS or so.

Hi I live in the Tampa Bay area and I travel to Pensacola for my POTS doc and Charleston for my MCAD doc. Randy Thompson in Pensacola is the only Dysautonomia doc I could recommend in FL. That said, Nancy Klimas is in Miami not too far south from you. She is a CFS/ME researcher who is quite familiar with POTS and does all sorts of specialized immunology testing. Last time I checked she did not take insurance and it was a bit pricey to have the testing done but she might be someone else to consider especially since fatigue is in your signature line and she is just a short drive away. Best to you.

I don't have any evidence or suspicion of PTSD in my case. I do understand as mentioned above that some patients w PTSD may have symptoms similar to Dysautonomia. I agree with B above and wonder why this would even be suggested unless you've already been diagnosed with PTSD.

Lol Rama! On the flip side, Mayo's publishing of the Compass 31 Autonomic Dysfunction scale is a big help in giving docs everywhere an objective assessment tool for Dysautonomia patients. I believe Rachel started a thread on this at the first of the year.

In SS law the legal fees are a set amount (determined by the federal government and not state) paid for by the benefits you are awarded only after you win. There should be no legal cost to you. Feel free to PM me if you have questions.

Oh my Dana! I can't imagine how hard that has got to be on the both of you. What state do you live in? There has got to be a way to get assistance but that is likely a long term process. I even needed help of a friend who has some legal assistant experience to fill out the papers and many months to get on disability. Do you live with family? have help of friends? I will be praying for a miracle for you and your hubby.

Better. Usually lots better with what appears to be better circulation and blood flow to the brain. As stated above the problem is stopping. When I leave the gym, usually right after I've pulled out of the parking lot, I literally feel the blood draining from my head and the lightheaded brain fog sets back in. AND, if I walk for a mile or more, when I stop it feels as if I am going to drop faint so I've learned to slow my pace greatly before stopping and that helps. Usually I will have a significant BP drop about 20 mins after exercise. So I make sure I'm not needed to do something right after exercise so I can go rest, eat and hydrate. All that said, there are exercises I do that make my HR rise really quickly creating dizziness or SoB - which I watch- and some I do that make me grey out- so I've learned techniques, like sit-stands, walking and breathing to pump blood back up which prevent me from greying or fainting.

To have more good days than bad and continue on this path of identifying triggers that cause my crashes. Right now I'm only functioning 50% of the time and most of that 50% is feeling really lousy. So if I could get to 60% and feeling a little better, that would be good. I've already had improvement on my functioning days with the addition of high dose antihistamines and adderrall. So I feel good about the progress made thus far. In my case I'm not too hopeful that I'll ever be back to my old self so I'm ok with one day at a time slow progress. Hopefully over the long term I will get better slowly, but if not, I'll learn new ways to cope and function. Eventually (but not this year) I'd like to be more involved in promoting Dysautonomia awareness in my area.

I do keep exercising when I am symptomatic but I slow it down a bit unless I'm in a bad crash and can't get out of bed and then I just miss a workout. Keeping up the routine of intense exercise 3/4x a week has been key for my improvement this year- although I crash often so it is not without problems. I suspect you are asking something different- as in sick, fighting a respiratory infection. I would not try to exercise through that if it were me. But this might be something to ask your doctor or exercise therapist about.

2 litters of saline IV Or 2 days flat on my back

I thank God frequently that the iPad was invented before I became ill w dysautonomia. There are some crashes- usually migraine related- where my pain, not just head but all over, is so bad I can't even watch something. Usually my breathing is so bad I can't do anything more than focus on breathing. (remembering to breathe and reminding myself that I'm not dying, this is just part of POTS. And that I will get through this.) Most crashes, however, I watch Netflix on my iPad and that is all I can do. Not enough strength to speak on phoneor function. Must be flat on my back which makes the iPad perfect. When I'm fatigued and need to lie down - or Recovering from a crash I can get on DINET, read books and research because I have more brain function- but not enough to do any sort of tasks. Sometimes I'm flat,sometimes head is elevated. As someone above mentioned, lying flat can make the migraine worse so when I'm having a migraine I try to change my position more. As another mentioned I have a hard time eating or drinking anything when crashing. I try my best to push salt and fluids but the worse the crash is, the harder it is. And it seems all of it stays in my upper GI area just sloshing around going nowhere. I spend about 50% of my time lying in bed. On average, two upright days w normal Dysautonomia symptoms and two days down crashing.

Terry, you described some of my feelings so much better than I did. Yes, I get all those and the pain- but it sounds like you've gone longer periods of time without them? My longest since I've been tracking is five days w/o a crash and I just finished a four day crash- but more oftenit is one day on, two days off, two days on,one day off, etc. Wonder if there are other similarities in our cases.

In the last year I've had lots of improvements. I've gone from being homebound to limited driving. I've gone from not being able to exercise to exercising strenuously about 3x a week. I'm going to the grocery store and doing some limited cooking but I'm really still struggling with crashing. (at least that is what I call it.) I crash about 50% of the time. This means non- functioning in bed. It usually lasts one or two days. During this time either my husband or mother takes care of the kids or they take care of themselves (thank goodness they are old enough to if need be.) It always involves the following severe symptoms: - body ache. (like hit by a Mack truck) - fatigue (like getting to the bathroom requires unbelievable effort and on really bad days need to hold on to walls to walk.) - brain fog (can't think productively mostly think about is survival- breathing, not fainting, etc.) - sensory overstimulation. (lights, sounds, touch all hurt so I try to stay in a dark room w earplugs or headphones- I can usually watch Netflix and sometimes I have the strength to be on DINET using my iPad while flat on my back- like right now. My husband and I joke that how I feel is directly proportional to the amount of Netflix I've watched.) It almost always feels like the sympathetic nervous system is shutting down the parasympathetic. I get gastroparesis and silent reflux and all my nerves are on hyper mode. Usually bad headache, neck pain running all down my spine. At its worst I get throbbing all over- from my toes to my teeth. And many times I struggle with breathing. A lot of the time it hurts so bad I just want to be taken out of my misery. But I keep reminding myself, "this is just part of the Dysautonomia. God is still in control and you will feel better soon.". Sometimes it is triggered after -being upright too long -being over stimulated (by lots of people at church or a party- I basically can't do parties- well, I can pop in for a few mins, but then have to retreat for a while. I used to love hosting events and going to parties but it is so hard anymore- they make me too sick.) - localized pain: a headache, kitchen burn, etc. that moves from the local area of pain through my head, neck and spine. Neck pain at the base of skull is usually the worst unless I have a migraine with it. -exposure to chemicals (such as getting my hair colored, or having my house cleaned with chemicals). And, sometimes it is completely spontaneous with no stimuli. (I learned this during my 8 day inpatient visit at Vanderbilt. It was quiet with little stress. They did the cooking and cleaning for me so I expected not to crash- but I crashed two times anyway.) Since November I have not had a week without a crash and most weeks I have two or three crashes. During the Christmas break when kids were home from school and we had the extra stress from Christmas and family birthdays I was crashing more than 50% of the time. So, I suspect stress exacerbates the crashes but does not necessarily cause them. Sometimes my blood pressure can drop really low (like after that hair color I mentioned earlier my BP dropped to 80/45 for 5 hours.) No amount of salt or Gatorade helped to improve it. But most times my blood pressure is normal - just now it was 104/70- very normal for me. Usually a couple of days in bed flat on my back will get me to my normal Dysautonomic feeling self. When it doesn't I can usually count on a couple of liters of saline IV to bail me out. Would love any input or suggestions. I imagine many of you can relate. I'm curious though- How often do you crash if you do? And are your crashes similar or different?

Yes. Learning something and then forgetting was with us every step of the way. He would learn, then forget and have to relearn. And if you've already read about SID you may know that each kid can present a little differently either "hypo" or "hyper" in each of the sensory areas. Ronny had a lot of issues with proprioception - where he was in space. For example- Once he was walking he would come to a crack in the sidewalk and have to crawl over it because he was afraid it would cause him to fall. It is like they are trapped in their mind. I remember many a nights looking in on Ronny in his crib praying for him because I knew he knew something was different about him and he didn't feel good about himself. I prayed for his esteem. Today Ronny is one of the most self assured kids I know. He is also very bright and is at the top of his class. Cool huh? Also, today Ronny has no recollection of his difficult start. You may already know about it but the "Out of Sync Child" is a great resource. Glad Aaron is not showing signs of autism but it is good you are taking time to rule out other conditions that can coexist w SID. Based on what you've said it sounds like Aaron and Ronny are a lot alike. If you want to PM me with more details about Aarons history and things you've been concerned about I can tell you which of those are similar to what we experienced and which are different.

I get this too- all peripheral when it comes to the icy chilled feel but I can have the hot burning feeling all over. I don't know why but I suspect the hot chemical burn feelings I get are due to Mast cell issues. I imaging the icy cold on my arms, shoulders, hands, legs, feet has more to do with poor circulation. Hmm -- my feet are in front of the fire now (and have been for over an hour). But they are ice cold. This is one crazy condition.

Sorry to hear you are having to endure that stressful noise. It makes me cringe just to think about it for you. That's a great idea. I'd try it. Sensory overstimulation and hypersensitivity are a huge problem for me- one of my top 5 most debilitating symptoms. Hmm... Maybe I should try that sometime. I don't have Valium but I have Xanax. Imagine that would work in a similar way.

Yes. I get this too. Usually feels like a chemical tingling burn on either the inside of my skin or in my bones. Like a million tiny burning pin pricks.

Adderall does not seem to impact my BP but I have noticed some erratic increased HRs. However, it does not affect my resting HR which is the key. I was a bit apprehensive in starting this med for that very reason. For me it has not been a problem.

Tennille, I remember you and I'm so glad you posted and updated us all. Your update really encourages me. I'm living about a half life- half crashing in bed and half feeling ok but not great. I'm doing better at learning to live with it but your message comes to me at a time where I need some real encouragement. And Im very excited to hear about your doctor helping to spread the word. It is so needed. Thank you. God bless!

Yes. Oh my! You are describing parts of my experience with Ronny- my 4th child (who is now 9 and is doing great now after a really difficult first 3 yrs of life.). I have suspected there is a connection to my last pregnancy, my son, and my Dysautonomia but this is the first time I've heard of anyone else have a similar problem. At 20 weeks during my pregnancy I started contracting. ( this is long before I became ill w Dysautonomia. I was very healthy prior to these contractions although I was at high risk for pre term labor bc my 3rd child was 6 wks early.). I spent the next 18 weeks in a deep fog, and deep depression and had severe Orthostatic intolerance (although back then I didn't know to call it that- I just couldn't stand for any length of time bc of the overwhelming pain and contractions. The only thing that stopped the contractions was lying down. The doc said they were not productive contractions (like braxton hicks) but they were painful not just in my belly but also down my legs and I couldn't do anything upright. So I was not on medical bed rest but I was on bed rest because I was in too much pain to stand or do anything. With 3 other little ones in the house I had to have help every day. It was a horrible situation. I spent most of that time in tears- hormones flying. Ronny was born healthy at 38 wks. And I felt so much better. I was slower in recovering from that birth than the others but was happy to have a healthy baby. At about 6 mos we noticed there was something wrong because we had already seen his 3 siblings at this age. At 6 m the others were sitting up. But at 6m Ronny was flopping over like a rag doll. Very low tone. I mean scary low. He wasn't really even holding his head up that well. So the quest began to figure out what was wrong with this kid. Oh my- this led us on an enormous wild goose chase. We visited almost every pediatric specialist and did testing and poking and prodding on this poor child trying to figure out what was wrong. Meanwhile he missed all his developmental marks. Crawling, standing, talking, walking- I think the only thing that happened "on time" was his first tooth. We kept coming back to our pediatrician saying, "there is still something wrong, help us find it" and she just said without any clinical evidence of a problem she can't give a diagnosis. We were in the process of ruling out autism, muscular dystrophy, deafness, brain tumors, and on and on. Thank goodness she recognized early on that we needed therapy so she started at 6 mos by writing a script for physical therapy- then a few mos later speech therapy- and eventually at about age 2, occupational therapy. We had heard great things about this occupational therapist. And during that first visit, before we even made it back to her room she said, "Oh, this guy clearly has sensory integration disorder.". And so began the quest to understand, learn and treat this condition which our pediatrician only anecdotally recognized. (I think it is better recognized in the medical community now.). Ronny actually had a severe case of Sensory Integration Disorder (SID.). If my hands were wet and I touched him, he would scream in pain. If we tried to cut his hair he would freak out as if I was cutting his fingers off. He couldn't walk over cracks, or flat footed. He had a hard time with balance and eating a green bean to him was like eating a piece of glass. Our local news station actually came out and did a story on him because it was such an interesting case. Here's the thing: SID is a dysfunction of the autonomic nervous system. Essentially the sympathetic and parasympathetic nervous systems are not balanced correctly so they dont process incoming sensory data properly. Hmmmmm - as a side note this is one of my biggest symptoms- hypersensitivity and inappropriate processing of incoming sensory data. So in the case of Ronny, he couldn't learn how to sit up at 6m and had low tone bc he was not learning. For instance, most kids at that point have spent lots of time on their tummy, rolling over and learning balance. Well for Ronny all that incoming sensory data (the feel of the carpet on his skin, the sound of his brother in the room, the lights from the window were overwhelming his senses and he couldn't move forward in his development. He was super low tone but it wasn't an EDS situation it was an autonomic nervous system processing problem. I could go on and on about this- we have loads of records and documentation on it. Which I'd be happy to share in more detail- just PM me. But in the end two things helped: 1- early intervention of all 3 therapies (PT, OT and speech) 2- changing his diet. (we found several food sensitivities and once we changed his diet- I made almost all his food from scratch during those early years) Today you would never believe there was ever a problem with Ronny - unless you were very close to him. Today the only thing that is still difficult is a classroom, lunchroom or any room full of noisy kids/ people- too much sensory stimulation. But now he knows how to handle it and adapt. I will pray for you and your situation. Yours may or may not be SID but it would definitely be worth ruling out with your doctor. And I'd love to stay updated on your situation.

Btw- the reason I suspect the Adderall doesn't help when I'm crashing is that it is not being absorbed.

Sorry to cut in on one possible answer here. I've recently started on Addreall and it is one of the best meds I've tried so far. It does not help or hurt during my crashes- every day or two I spend a day or two in bed crashing where My sympathetic system shuts down my parasympathetic system and it is like being in a full trauma- digestion stops, every nerve on overload, difficulty breathing etc. BUT On my ok days, for the first time in almost 2 years I have a clear head and a little more energy. So keeping in mind that most of our treatments are counterintuitive Adderall is no different. Three big reasons why it helps: 1. It is a very powerful vaso dilator 2. It stimulates circulation 3. It tricks the sympathetic nervous system with the presence of synthetic adreneline so it doesn't think it has to produce as much natural adrenaline. As a side note, before I had a diagnosis (in the first month following my onset) I would get almost daily adrenal surges that looked, acted and felt like panic attacks- almost exactly as described above. They would always be preferred by this overwhelming wave of pre syncope that was the worst feeling in the world- like dying, which I still get from time to time minus the palpitations, exposing pain and tremors/body shaking. I don't know why they stopped but I suspect they were huge adrenal dumps that were uncontrollable.

I am so glad to hear that. She is lovely. And Dr. J was already overloaded so I had been wondering how they were managing. Some of their testing there is outstanding (ie: Hemodynamic lab) and well worth it if you can navigate the path to the right tests. CC is great for diagnostics and helping to give guidance to local docs on appropriate treatments. Even before she stopped seeing new pts scheduling was a bit challenging. I had to call several times to clarify what I needed to get scheduled during my visit. Since then I've realized this is a problem with other facilities as well- CC is not alone. This is why we have to be diligent as our own patient advocates and check, double check and triple check appointments, lists of questions for docs and medical records. Thanks for posting.