smiles

I take bioidentical hormones with testosterone, estrogen and progesterone in it. Then I have an estrogen cream for just before and during my periods. I am in premenopause. The hormones help significantly!! I'd be a basket case or in the hospital every time my body decided to have a period if I wasn't on them.

I too occasionally feel guilty. Mostly it is when I see my family making so many sacrifices for me when I am really sick and stuck in bed. When I'm not thinking real clearly I tend to fall back into thinking that it my fault they all have to care for me. I try to think positive most of the time and have come so far with accepting this disease. My family says they don't mind caring for me and they don't complain about it, which helps me deal with all this better. Guilt is not from God so I know I shouldn't accept it as a regular thought--but sometimes it slips in before I realize it. Then I have to tell myself how lucky I am to have such a great family. It is not our fault when we have a flare up or just a physically miserable day. Being so sick can play with out emotions. I struggle with the unpredictabiliity of this disease and feel bad when I crash and my familly has to change their plans because of me. But I would do the same for them. We love each other and help each other out. That is what families are for. Therefore, guilt is no longer a regular part of my life. Jesus helps me have strength to get thru all this fairly sanely. Good luck on your journey thru the maze of dysauotonomia. Love, Smiles ps. I tend to tell people that I have good days and bad days. That is the truth but I am not complaining to them, It is general enough statement and if they want more info they will ask me.

Me too, me too! Who knows why? Just autonomic system whacked out I guess.

Oh periods, periods!!! How they can mess with our autonomic syst!!!! I am currently there and stuck in bed because of such bad flare ups. I am in premenopause and on bio-identical hormones to keep me sane. My flare ups are severe during my period and I do get hormonal migraines too. I have insomnia right before I actually start. I do get mild relief from adding an estrogen cream before and during my periods. I wish I had a better answer. I am down to about every other month and they only last 2-3 days but they haven't stopped yet. I am so ready to move on to real menopause!!! Never thought I'd say that but, 'bring it on!" I do have to go an internal med doc to get my hormones. Autonomic doc does everything else.

It is so hard to find the right doc. It took me years. I tried neuros, endos, GI, GP, cardios, psych, internal med, chiropractor, AD doc..... I have had the most luck with autonomic specialists and a cardiologist. Luckily for me my cardio is also my autonomic specialist. That works well for me. He is in Auburn, AL though. He is willing to try different things till something works. He's open to natural stuff to. He realizes that each of us is different and has different needs. I'm unfortunately a one of a kind for him. For me the neuros. and endo. were the least helpful cuz knew nothing about AD. It may be different somewhere else. But in a 4 hour radius from here, that is the way it is. I've had so many referrals to other docs from docs who had no clue what to do for me, and those docs couldn't help me either. Some thought it was in my head and needed a psych, which I tried and they said it was physical. Crazy, Crazy. Just keep trying. don't give up--you'll find one. Smiles

I agree, Chaos. On my good days I seem to function so much better and can talk up a storm. On my bad days talking may be a struggle. I used to love to sing. Now I must pick 1 song to sing with at church or parts of 2 or 3 songs depending on how I am feeling. I take a break as needed and no longer care what others think around me. I am worshiping in my heart whether my mouth is moving or not. Luckily laughing doesn't bother me too much. It is quieter on the bad days and more hysterical on the good days. I also wonder on good days why I can't function on the bad days--it doesn't seem hard on the good days. Then on the bad days I can't figure out how I did so much on the good days. Today I can hardly get over a whisper and am bed bound--have a bladder infection that has put a halt to everything in my life: movement, eating, going to the bathroom, talking, you name it, it's slower or none existent. Smiles

'The lamictal is working! Praise God. My convulsive activity is down to just a few minor facial twitches and my left hand curls with muscle contractions. I just went up 25 mgs and that should stop it altogether. Just wanted to update anyone who may be interested. It does calm that darn vagus nerve. No side effects except slight taste in my mouth after i take it and it slows my colon slightly. Smiles

Any infection, bacterial or viral, even the slightest abnormality in my body will cause a convulsion for me. My vagus nerve seems to be the culprit much of the time. It is not regulated properly and is hyper sensitive to changes in my body. New meds, my periods, flu shots,...can all cause a convulsive reaction. I've had rigors with high fevers or with problems with my temp. regulation. If I get too cold and can't seem to get warmed up quick enough, my body may have rigors or convulsions. Unfortunately for me because of my vagus nerve I also convulse sometimes after a bowel movement or during eating. (a rare autonomic condition called swallow syncope [deglutition syncope] and micturition syncope)--not sure I spelled that right. So, yes, more than likely your convulsion was from the flu. Smiles

oh my gosh, I just went thru this 2 days ago. I feel apart emotionally. Usually I can accept this stupid disease and my limitation without excessive emotional pain. I have however spent almost 2 weeks in the hospital. They talked about putting me in a nursing home. my wonderful family said no and took me home. My husband is on catastrophic leave from work for a few weeks till I get back on my feet again or in my w/c. I've been mostly bed bound and have lost much strength. Convulsions racked my body so I've been on huge doses of meds. I am doing better physically--convulsions stopped with addition of an anticonvulsant med. winter is worse for me too. I alway seem to end up in the hosp. for weeks in the winter. When I begin to start functioning again I go thru this horrible grief over what I've lost in weeks or months of my life. My memory is effected. The boys say something and I ask when that happened and they tell me I was there. Memories are just gone. They escape me. This disease grows wings and flies away with my the things that are most important to me. Time with my family is lost. Time goes on while I lay in bed, sometimes barely coherant. Huge losses reveal themselves as I begin to come out of the devestation of my weeks of non-functioning. I've been unable to eat regular foods. At first it was liquid diet, then purreed foods, then mashed foods. Thinking of trying something soft but solid today. One more loss. The isolation from social contact. I'm a people person. I crave social contact. I've tried face book and have found it recently to be a great help to me. Our town changes will I am home bound. I go out again, and ask when this or that was built or when they moved the court house from where it's always been. I miss large chunks of time never to retrieve them again. Luckily it doesn't effect my long term memory just recent past. I cried alot a few days ago. It was therapeutic. It was devastating. It was painful to experience. I'm usually so positive and look at all the blessings I have. my losses overwhelmed me though. It's normal. It's natural. God gave us emotions for a reason. It is some how cleansing. I find myself having to get the emotions out, usually thru uncontrollable tears. I have the need to talk about it--get it all out. Be accepted in my pain. Then I somehow pick my self up and go on. God is my strength, a very present help in times of need. He opens his mighty hand and satisfies again. It lessens my pain no more but provides hope in gallon buckets for me. Life goes on. I will yet again praise Him. His grace and mercy are ever present for me. His Word, the Bible, becomes my comfort as I clear the tears from my eyes so I can actually see the pages. This response seems so long but my grief is so fresh that it rises to the surface again as I type. The pain is so deep. I used to wonder if I'd ever be the same. I wont. But I will be all that God needs me to be. I will be better because I will rise above this temporal grief and be stronger and know that I can get thru anything this disease throws my way. If we can survive this we can survive anything. I choose to be better not bitter. I will rise from my pain. Tears again fill my eyes. Pardon me as I wipe them away. I hope that some how this will be meaningful to some of you. I pray it will let you see you are not alone in your grief and loss and pain. It is real. It is our reality at times. Just as our joy of better health will be a reality when it comes. God bless all you fellow strugglers. May joy soon return to our broken hearts. I love you all. Big Hugs. I love hugs. Smiles--soon to be smiling again.

Help! !!!! Just spent 11 days in the hosp. with docs treating the symptoms. Nothing helped till I moved to a liquid diet. Now I'm trying to gradually work up to pureed foods, puddings, yogurt , mashed foods....and again having flare ups again. Any suggestions? What do I do. I am already on ativan, detrol LA, GABA, an occasional cyclobenzaprine and just began Lamictal to help control it. Lamictal isn't in my system enough yet to see if it will helpl DR. suggested a nursing home 2 weeks ago. I about had a cow!!! And so did my family. They are willing to do what it takes to take care of me at home but this is getting ridiculous!! Had an episode after a BM that took 6 mg. of oral liquid ativan, a GABA 750mg. and a 1/4 cyclobenzoprine to get it stoped. It was my second flare up today, and worst episode since I've been home from hosp. (came home Wed. p.m.). Please, anyone help me!!!!!

Yes I am conscious. I can hear but go limp at first. Then as I come around some my speech is either gone or slurred or barely understandable. Then my face starts twitching. Then my hands or arms start to shake. Then it may move to a leg or the other arm. Only occasionally do they get whole body. GABA (amino acid and neurotransmitter from health food store) has helped alot. but is not working so well now. Mine are not epileptic but autonomic in origin. I've read about the rash issue as a side effect. Hopefully I wont have that probl. but I will be on the look out for it. What kind of seizures do you have?

Am in the hosp. for vagal nerve flare ups which take IV ativan to control. They want to start me on Lamictal to help calm the vagal nerve. It uses a form of GABA which I am already on and has helped me in the past with seizure like episodes. Anyone else on this? Smiles

Thanks for the input. I thought I might be having a reaction today but I think it must have been cuz I tried to vacuum up the peanut crumbs. I spilled peanuts on the floor in my bedroom somehow. My son comes home at lunch to check on me and after getting me some meds and hearing I also, in the 4 foot space I vacuumed, I sucked up a sock and then tried to pull it out. He says, "Mom, we need to put child lock on that vacuum cleaner so you wont use it. I would have vacuumed it up when I got here." Such is my life.

I've been having more flare ups lately and my doc added ProAmatine (Midodrine) to my med regiment. Anything I should know? I know many people are on it. I hope it helps stabilize me more. They are hoping that adding it in between my Yohimbine that it will increase the combined effect to help the benefits last longer. Any side effects I should watch for?

I have multiple forms of autonomic dysfunction. One of my more difficult symptoms (well, I don't know, many are difficult) is the affect on my speech during or before or after a flare up. I also have times where I babble like a crazy person, can't form words even when I know what I want to say. These symptoms always come with other symptoms. My children can tell before me when my speech is getting affected and they've learned to tell me to lay down. If I don't listen they will take my hand and lead me to the couch or just insist that they are serious and then I realize that they are trying to warn me. I can't tell whenI'lm beginning to have problems, but other people notice it first. If I don't get it under control quickly it then goes into the babbling, non-sensical stuff. "Mental status symptoms: I will go through periods where I can barely form a 2 word sentence, and will babble like a fool... also I have alot of the "tip of the tounge syndrome", and it almost is like my brain is not working at all."

I'm on Effexor XR 75 mg. to raise norepinephrin and increase circulation, and balance brain chemicals. I am also on Yohimbin to increase peripheral blood flow which helps alot!! I am more recently on spuedoephedrine 12 hr. which increases norepinephrine also. Meds can be so complicated! Smiles

I'm on Effexor XR 75 mg. to raise norepinephrin and increase circulation, and balance brain chemicals. I am also on Yohimbin to increase peripheral blood flow which helps alot!! I am more recently on spuedoephedrine 12 hr. which increases norepinephrine also. Meds can be so complicated! Smiles

Sex--what a beautiful thing. Before or after dysautonomia! It's just different now. My husband of 27 years has adapted and i have accepted my limitations. We have learned to be creative as someone else said. Obviously if I'm in a flare up or having a non functioning day it is out of the question. On my better days or even my 1/2 good days I'm up for it. I crave the intimacy and will deal with the aftermath of potential exhaustion. My husband is so accepting of my limitations and glad to get what ever I can give him. I am actually the initiator usually. Sex is shorter now than it used to be to prevent exhaustion. I had a catheter for a few times and we even learned how to do it with a catheter----very carefully. lol. (I taped the catheter to my leg in several places so it was out of the way.) I have occasionally gotten brain over stimulation or overload and had to slow down or just let him finish pretty quickly. It was still worth it. Sex is always worth it to me. Part of it may be for me that I can prove to myself that I can still in some way be who I was before and enjoy some of the things I used to enjoy. New positions have helped too. I want to please my husband and love of my life and he wants to please me so we make it work. Our creativity brings increased communication which also helps us as a couple. I love sex. It is a natural expression of our love for each other and I am so grateful that I can still have it as part of my life. It makes me feel important still. It release good hormones my body likes. We text each other intimacies meant just for each other. I am one of the lucky ones who has a man who is committed to standing (or laying,lol) beside me thru thick or thin, in sickness or in health. I rejoice in the man God gave me. Sex is an expression of that and worth any reprocution I may have to pay for afterword. Smiling Smiles

I put my meds for the week in a med box that has removable sections for each day. Each section has a separate section for morning, noon, evening and nite. It helps me keep up with what I take when. I also have a notebook that I record notes of each day. In the front of the notebook is a sheet with all my dx and all my meds and dr. info and ins. info. We take it every time I go to the hospital because I usually can't talk when I go the hosp. and they need that info. Hope that helps. Smiles

ok, I know that what I had the other day was not a migraine but thought maybe you all could help me figure out what happened. I have been having more flare ups lately and they've been more intense. I've been trying to take it easy more but that hasn't helped much. I wasn't feeling very well--had been laying on the couch for an hour. I went to sit up to go to the bathroom. I had to sit there for a few minutes to feel ok before I got up. Usually I can walk to the bathroom but I had to take my w/c. I remember saying on the way that something wasn't right. my body felt funny all over. That's my usual, pre-flare up talk. I went and peed and on the way back to the couch I got this insane pain right above my eyebrows on my forehead. It was so bad I couldn't even get my electric chair back to the couch. I remember having both hands on my forehead and writhing in pain. I typically do not have pain during my flare ups. I have never had a headache like this before. Of course my family responded quickly with my usual meds plus Tylenol. I was crying pretty intensely from the pain--again, unusual for me. I was shaky and had some muscle tightening/cramping. My speech was not as affected as usual. It all seemed to settle down in ab out 50 min. or so. No other headaches since then in the last few days. I still am not back to normal, but that is normal for me after any major issue like that. So what do you all think? Smiles

ok, so I'm not alone. That part makes me feel better. I do so wish that there was a way to prevent this though. I do have to take something to make my bowels move because I have a sluggish colon that will not work on it's own. After having my 3rd problem with this in 2 weeks yesterday, I have decided that it would be wise of me to increase my med to 1 1/2 instead of 1/day to see if that keeps me more regular. I guess it bothers me more because I've been more stable in that area lately(until the last 2 wks.). Thanks for your replies. It does encourage me that I am not alone. It just stinks that such basic functioning can cause our bodies to shut down. I was at church yesterday and realized that I could not wait till after church was over to have a BM. When ya gotta go, ya gotta go. So thru the sanctuary I rolled in my electric wheel chair. Was ok at the beginning of going--or so I thought. The lady in the stall next to me ask if I was ok. That always worries me. I managed to get out an, "I think so." That's when I realized maybe I wasn't so ok. my speech was already softer and slower. Those are the first signs of me going down hill. The other lady said she's wait and see if I'd be ok. I managed to get out in the hall way and recline fully while she went to get my son from the sanctuary. By the time he got there I could barely keep my eyes open and my speech was very slurred. He got me in the van and took me home. I ended up sleeping most of the day. When I awoke my speech was still slow and I couldn't sit up long without getting real light headed. Bummer. I am talking ok and can walk some again today but know I'll need to take it easy to prevent another flare up. I so wish I could be normal. Smiles

I have had autonomic convulsion (not true seizure--don't show up on EEG). They are horrible. They usually go along with an autonomic flare up of some type. GABA (a neurotransmitter and amino acid) has helped me a lot. Nothing else has helped. I used to have to go to the ER to get them stopped with IV meds. Smiles

So, is there anything we can do to prevent this problem??? I have flare ups if I miss a day of having a bowel movement. The next day when I do have a BM I am weak, can't sit up, speech affected, can't get out of bed... It's happened 2 times in the last 2 weeks. It blows my whole day. I am able to do more now and so I get pulled to a halt when this happens. Then yesterday I had problems when I peed or drank something in the evening too. I know it's from my vagal nerve being over stimulated. I have a very sensitive one unfortunately. My BMs are not hard and I do not have to strain. It is just the fact of going after missing a day. Yuck! Any answers or help?? Smiles--still in bed

I have a reclining, tilt in space, ellectric w/c. It has changed my life. Most people aren't elegible for another w/c except every 5 yrs. I already had a w/c given to me that someone could push me in. I can do so much more for myself now. Congrats on getting a new chair. You'll get used to it pretty quickly. Smiles