bamagirl

Have you had an mri of your lumbar spine? That can cause numbness and weakness in your legs if you have disc bulges or disc herniations. Although, I will bet my lunch money it is just plain old dysautonomia!!! Hope this helps, bamagirl

Am I the only one who doesn't faint? My problems all revolve around these tachy surges. I get them and then I have migraines and nausea for days. These episodes are getting worse and more frequent. I drink more and more water and eat tons of salt and I still get the surges. I even get the surges when my bp is normal, then afterwards it shoots up. I feel alone and don't know what to do to make it better and I don't understand why it is worse now than ever. My vision is also terrible. My head feels like it is spinning all the time but my brain mri is normal. Can anyone else tell me what is happening and what the good docs are saying about it? If my plasma normetanephrines and metanephrines are high, that should mean that my body is releasing adrenaline, right? If so, what helps with that? And does this get better in time because mine are getting more frequent and more severe!!

I am not a fainter. I have these horrible episodes of tachycardia with high BP and then I am tachy for weeks afterwards and very sick. I had a blood test for metanephrines and normetanephrines and they came back high. I will not be able to see my endocrinologist for another week. Has anyone else had this test and if so what does it mean with dysautonomia? thanks, bamagirl

I have been getting very dizzy and feel like my brain is literally vibrating in my head lately. I have been lying down when this happens so I know it's not postural. Also, anyone have itching? My face and neck have been itching like crazy!!! bamagirl

My vision is still the main problem for me. I feel like I am drunk all the time or my eyes are crossed. I don't understand what is going on. I have been to an opthamologist-everything ok. Anyone have this problem and can give me some advice? thanks, bamagirl

I know most of you guys have been to the best dysautonomia docs out there and I was wondering how they test and determine if the condition is primary or secondary and what can cause the dysautonomia. Can someone give me some info on that who has had that explained to them and had a determination made? thanks, bamagirl

Anyone have problems with watery eyes? Sometimes it's one or both and it can happen to either one at either time. Sometimes mine get so bad I rub the corners of my eyes raw wiping them. bamagirl

Thank you Belinda for your wonderful kind words of encouragement. Normally I am the one who is strong and gives optimistic words but right now I am so physically and mentally tired of the life of dysautonomia I need some uplifting. You give me strength with your kind words and I appreciate all of you for helping me get through this very trying time. Let's always remember we are all in this together!!! bamagirl

Since I have watched and felt this horrible disease slowly take over every part of my body over the past twelve years, and now for the past three I had to quit work because it is so bad I was wondering from you guys: Is this going to continue to get worse and worse progressivley? Does anyone get really bad and then slowly get better? I am a lost soul righ now and just breathing and nothing more. I have tingling and creepy crawly sensations every day from head to toe, adrenaline surges, sleep constantly then when I try to sleep I feel like I am on speed, vision is drunk feeling, low bp, nausea, itching, flushing, constipation, sesitive to light, startle reflex out of control, feet and hands go numb, can't take heat. This is every day. How can I live with this and be ok? I have yet to find anyone who has all my symptoms, I am realy scared and feel all alone!! bamagirl

I feel like I am dying. I am the sickest person I know. Even as I read here there are mostly people who aren't as bedridden as I am. Maybe I am missing something? My vision is so bad I can't even explain it. I feel drunk or on drugs or something all the time. I am nauseaous every day, have nonstop chills, my skin burns, I have horrible adrenaline surges that make my hr go up to 200, migraines, tingling, dizzy, audio hallucinations, sleep paralysis. This has all gotten worse over the past four years. Does this mean I am going to get worse and worse? Are there any chances this will get better? Please if anyone out there has all these things to I really need to know how you are doing and how you cope!! I am not a fainter and my hr doesn't go up every time I stand. All my problems focus around these adrenaline surges that make my bp and hr shoot up. Please I need some support. thanks everyone, bamagirl

Does anyone have an ear that feels like it has water in it? My left ear does this from time to time. Is this normal in dysautonomia? bamagirl

I understand how you feel. This is the first year that I have actually stayed home without family or friend interaction because I feel so terrible and am having adrenaline surges alot. Hang in there and remember a good day is on its way!!! bamagirl

Is vision problems a main issue for anyone? FOr the past 2 months I have been walking around like a zombie feeling pressure in my head and feeling drunk and wobbly. This has never been this bad and my eyes are really bothering me. I have really bad sensitivity in the eyes too. This is so bad I am bedridden. ANy docs give a reason for this and offer what may help? AM I ALONE? bamagirl

I have had problems with adrenaline surges for about five years now. I would get one about 1x every 6mos or so, however, the last two months I am getting them twice a week and now my bp is shooting up as well. Anyone who has these surges and who can tell me maybe why they are worse? I would like to know the physcial reasoning behind the surges as well. take care all, bamagirl

Can you guys tell what kind of day you are going to have by your vision when you wake up? My vision is blurry, and my heart rate is up this morning. I know it is going to be a bad day today, I can feel it. Also, who has skin hypersensitivity? My skin feels like it is burning and stinging at times. Hope you all feel better than I do. Merry ****** Christmas!!

I am so sorry for all the whining but I feel like my life is over!! For the past 2 yrs I have been bedriddden, unable to do anything except lay in bed. I am having daily adrenaline surges that make my bp shoot up to 167/100 and my pulse 210. Then afterwards I have migraines, nausea and horrible fatigue. I am also so tired from the low bp and hr in between these surges that I am useless!! My body hurts all over from the stinging nerve hypersensitivity. I have been drinking 72 oz of water everyday and eating so much salt but nothing is helping!! I also have these involuntary limb jerks and audio hallucinations with sleep paralysis at night so sleeping is miserable also. My eyes have also started watering constantly and I discovered that is also a neurological problem as well. I have been dealing with this for 5 years and I am worse now than I have ever been in my life!!. The problem is, everyone is telling me it will get better just be patient but I am NOT getting better. It is all I can do not to find something in the cubby to swallow and end it. Any one out there who can give some advice I really need it now!!! thanks everyone, bamagirl

I recently saw a dr who is somewhat familiar with dysautonomia and keeps close tabs with dr. grubb and he informed me that 80-90% of people get better and the autonomic nervous system resets itself in a few years. My question is: If this resolves in time, why have I over the past five years had more and more parts of my body effected by this? And why do I feel worse now years later more than ever before? How do you guys feel about that theory and do any of you feel or believe you will resolve in time? Mine came on suddenly and I wasn't born with this. No-one in my family has ever had this either. bamagirl

Has anyone had a doctor explain what causes the nausea in dysautonomia? I wake up sometimes with nausea in the morning and have waves all day long for days. Since I have these horrible surges in BP and hear rate and no BP drops or fainting, I wonder if something is stimulating the part of the brain that triggers nausea. Anyone get any confirmations on this theory? bamagirl

Does anyone else have vision changes since they developed POTS? My vision is very bad when I am symptomatic. I can't read because the words blur together and my eyes are very sensitive and tire easily. I have had a full eye workup and the eyes are normal, it's something systemic that is causing it. Just wondering if it's normal in POTS. bamagirl

After a bad adrenaline surge I get a migraine and nausea. Also my bp will go back down to 73/37 and my pulse 62 and stay that way for days. I sleep alot, my whole body hurts and I feel like I am crawling out of my skin. I also get that OH S**T feeling for days afterwards, kind of like right before you vomit when your body is telling you to something bad is about to happen. Does anything help this and what is the reasoning? I don't have any dr's here who know anything about this. And is it safe for me to take bblockers when my bp is so low baseline? thanks, bamagirl

I have dysautonomia for the past 6 years. One of my first symptoms was adrenaline surges. As time passed, I would get them about one every year, then every 6 months or so. Well, the past three days I have been getting them every day all day long. I went to the ER and they are no help. Does anyone get these surges every day? My pulse goes from 68- 175 and my bp gets up to 167/90. What can I do to help these surges. I'm not taking hot baths or showers, I'm staying hydrated. This is the worst I have ever been. These surges really scare me and I think I'm about to have a seizure or something. Anyone know what causes these surges? thanks bamagirl

Yes, please do because I always get mine when I am trying to sleep.

It feels like I have to remind myself to breathe or I will stop. It's pretty scary.

Anyone get air hunger? Last night I had a sleep paralysis episode, then air hunger, then an adrenaline surge. Sound familiar?

I have delayed gastric emptying and my dr prescribed it for me & all it did was give me the screaming *****!! :0 I stopped taking it right way.