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Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

Realy need help with this

I am 33 years old and a couple of years ago came down with being tired all the time. Went to family dr and they sent me for MRI blood work and everything was normal so sent me to sleep specialist . I had sleep study and confirmed I was very tired and said I had Hyperinsomulance?? not sure of spelling but its kinda like Narcolapsy... but a year into this my blood pressure has been low so dr said before taking meds to see why it was 90/60. I have these dizzy spells since October 2010 which I almost faint and Dr sent me to Cardiologist who confirmed I have Mitral Valve Prolapse, Murmer and Pulmonary Valve regurgitation, The Dysautonomia name came up at Feb appointment with dr when I told him about dizziness. He said Orthstatic Hypotention from the Dysautonomia. My blood pressure has fallen to as low as 67/53.  Last week I had a dizzyspell that was followed by shaking of my entire body for a min I just need to know if anyone else has this or can help with what exactly is happening to my body. My neighbor saw the shaking episode and said I needed to go to ER but I did not as I have had some shaking but never that long and she said my eyes looked glazed over when it was happening.  Please help.
49 Responses
875426 tn?1325532016
With the blood work when they did it- did they check your ferritin (iron stores) and thyroid function for possible sources of tiredness?  

When the dr said you had dysautonomia and orthostatic hypotension, had he or his nurse done orthostatic blood pressure measurements on you, laying, sitting, standing?  What is your pulse rate like?  Did the dr. suggest a treatment plan for your low blood pressure?

  I'm not a dr but the shaking episode your neighbor witnessed sure sounds like a seizure & your neighbor was right- but of course, you'd have needed someone to drive you to the ER.  But now, since you didn't go, may I recommend telling your primary care dr about the episode ASAP and getting a referral to a neurologist for further tests & also, not getting behind the wheel of a car in case an episode should happen while driving?  
Avatar universal
No but since Wed almost 2 weeks ago I have had a head pressure feeling ....this weekend it started feeling like my head was being shaken and full.  Dr said if shaking happens to go to ER. This head pressure is horrid. I have to lay on the side of my head or it causes pain only when its being pressed.  Took BP today was 80/60. but feel way off balance.   I appt tommorow with DR.
875426 tn?1325532016
Please, call an advice nurse and see if protocol says it's safe to wait for that appt. or if you should be seen sooner, given you symptoms currently.  Do you think it's a migraine or perhaps a sinus infection causing the head pressure and pain?  I think you should go to the ER today, personally, with someone else driving w/your low blood pressure combined with awful symptoms.  Please keep me posted.
Avatar universal
Dr said not to concerned with head pressure or fullness because of my lower bp thinks shaking was related to bp going down to low. Told to take the med in a 1/2 dose and see back in a week.  I drive short distances less than 5 min just in case something was to  happen. If pressure continues to get worse I will go to ER.   I never had a headache prior to dizziness and shaking episode . If the back of my head is pressed it send a shooting pain in my head. Feels very full. Pressure in my eye started yesterday and left eye in corner is bloodshot streaked.
875426 tn?1325532016
Recommend you see an opthamologist ASAP.
Avatar universal
Got some tests back today ...had ENG showed normal except for:

OPK's were bilaterally weak unable to maintain adequate eye movements repsonses reduced as intensity increased from 20-40 indicating possible CNS involvement.
Avatar universal
HI,
So sorry to hear of your health issues.  Just terrible this stuff and so confusing.  I am new to this and am not an expert.  But I just wanted to tell you that I was told for years that I was having seizures.  I did have a bout of grand mals while in the hospital but they said it was secondary to my blood pressure going down to 35.  IT was scary.  Anyhow, since then I do black out and have a bit of jerking and shaking now and then.  An incident did happen during a seizure test EEG or E something like that. Ugh,,can't remember.  Anyhow, they make you take several deep breathes and that's all it took for me.  When I came to I my leg and arm where up in the air and the nurses were putting blankets on me.  We were sure a seizure would show up, but it didn't.  I was shaking because I was so cold and I was also not able to talk.  It turned out to be a reaction from the blood pressure dropping so low.  EVeryone reacts differently and that is just how my body reacts.  They said it is a malfunction of my central nervous system.  Doc said, yes, it is a seizure in a way, not a brain seizure, but sort of an autonomic seizure, that seizure meds would not help and actually make worse, so I don't use the word seizure, don't want to confuse a paramedic.  I also used to get severe pressure, but in my right eye.  They never did figure out what that was about.  They were sure I had something called chiari malformation because I have pressure still to this day in the back side at the base of my skull on the right hand side with lots of swollen nerves and also a very inflammed occipital nerve.  But did not have Chiari.  Sometimes it is hard to find and have to have special type of MRI to find it and a doc who can spot it.  I have an appointment next to get that MRI done, but most times it's pretty easy to find.  I wish you good luck and hope you feel better soon.  And remember, I'm not a professional and I don't know you're situation and am only telling you what I have experienced.  So don't let me scare you. :)  Keep us updated.
Tkimber
875426 tn?1325532016
  So, they feel you may not only have an ANS (autonomic nervous system) problem, but possible CNS (central nervous system) problem also!  Since your eye muscles were not co-operating properly during the ENG test & they suspect CNS involvement, are they planning further testing?
Avatar universal
I am seeing a Neurologist Monday ...still having head pressure and eye is a little better still streaked but eye dr thought  could be tired or strained recommended change prescription. Got all tests being faxed to Nero today hopefully I am a step closer to finding out what this is ...as I have 1 dr telling me it is low blood pressure caused from dysautonomia and the mitral valve and the shaking episode was from bp going to low and  another dr that did ENG test saying that the shaking was probably due to CNS issues but he has ruled out no tumor,stroke or MS. but told me to see Neurologist.... I am assuming they will repeat some of the tests I had done prior to head pressure as most are year old.   I did have Ct  which was normal on 3-17-11. so not sure what they are going to do.  I just hope that if it is a CNS issue that the first symptom was tiredness all of a sudden a few years ago that they did not miss something that continues to cause symptoms.  I am very concerndt based on Dr saying that it could be and he was not making a diagnosis simple as a hormonal imbalance ( but all my blood work has come back normal so he did not think it was that ) or an past infection that left damage, but he felt based on results there was a connection problem lost somewhere and not sure what is causing it in CNS and see Nero Dr.  Hopefully Monday will have more answers as this has and continues to wreck havoc on my life.
875426 tn?1325532016
Please let me know what the dr. says & as I mentioned in PM, found out the ANS is one part of the CNS.  I'm curious about if they will consider the eye thing stemming from dysautonomia or not.
Avatar universal
ok I am just frustrated dr said not sure what is wrong brain checks out ok and so do all tests minus the eng will see me back in 3 months. I am about to write to all these dr and tell them if they don't figure out what is wrong soon they are going to be held finacially responsible. Yesterday I was completley confused when I walked out of mall area to which direction I needed to go and dizziness,tiredness and now pressure  has been going on long enough. Sorry just frustrated not knowing what this is and Dr ended appointment saying he does not want to run anymore tests minus blood tests he ordered because they are costly.  
875426 tn?1325532016
Since your doctor evidently does not how to treat your symptoms so you can live as best you can with this disabling condition you're experiencing- am I right?.... he should refer you to someone who knows more about dysautonomia.  It might mean you need to transfer to one of these places like Vanderbilt in Nashville, TN or something.  It seems the least he could do is orthostatic blood pressures and pulses- that's not expensive.  You may need to try to seek out a doctor who cares more about the patient than the bottom line.

The blood tests he ordered- is he checking for Addison's disease?  Is he checking your ferritin for iron deficiency?  Is he checking for electrolyte imbalance?  Has he offered any kind of treatment?
Avatar universal
ok nerologist doing tilt table test in mean time blood work came back high for epstien barr virus meaning i have had it virus recently asked if that was causing the pressure in my head nerologist not sure refering back to family dr ...ugh in mean time nero doing more blood tests red/white count and spleen test thru family dr did research on my own and guess what a damaged spleen can cause these symptoms from what i read just called family dr and asked about head pressure. I had another dizzy spell at neighbors yesterday and almost passed out. If this turn out to be a complication from that when i was at er , and family dr and they said not sure ...i may have to find another dr after this.
875426 tn?1325532016
Found a site that states involvement of the CNS with Epstein Barr occurs rarely.  See PM for more info on Epstein Barr.
Avatar universal
At 12 AM yesterday got huge surge of pressure and it made my left side of face feel like it had novicane called family dr who seemed like i was bothering them  and they said either go to ER or follow up in morning decided to follow up in morning left a message at 9AM for family dr and 9:30 for Nerologist I saw got no answer back so I went to Urgent care to have them look at it they said looks like I am not using left side of face thought I should be taken to ER which I declined as I have already been there.. Family DR called back at 7 pm and asked if I followed up with anyone Nerologist called  going to do MRI of Brain and Spinal due to face weakness scheduling sometime  this week  so hopefully I will know what is causing this as it seems to be getting worse. Numb/sleepy feeling is eye to jaw left side of nose  and I have tingling in neck area under jaw.  
875426 tn?1325532016
I hope he ordered the MRI with and without contrast!  Please let me know the outcome?  I'm soryy you are having such problems!  May I recommend (experience with my grandma when she had Bell's Palsy) that you frequently, daily massage the muscles in your face while they are i a state of dis-use?
Avatar universal
yes mri and mra is with contrast ....sleepy feeling is not making disuse just hard to talk sometimes out of left side feels like novicane but still can use i am getting pretty worried because my back area is tingling since this morning waiting on blood work to come back I wonder what is happening to me but it has to be connected to this head pressure everytime I get a burst I feel horrid and feel faint  will get results monday but hoping if radiologist sees something that is causing this he will be able to tell me Friday.  I am only 33 and this is to much actually thinking about taking the stress meds dr prescribed while I am waiting for answers.  
875426 tn?1325532016
I recommend on that temporary basis taking those stress meds prescribed.  Also, if you are a Christian, casting those cares on the Lord and fixing your eyes on Him will help!  Did you get your MRI done?
Avatar universal
Yes MRI of head was  normal radiolgist noted some type of small bulge on blood vessel ? Asking more about that on 18th for followup But dr does not think that is what is causing head pressure. Face numbness is gone and now back of head where neck attached is swelled and complete back is numb. Not sure what is going on with my body but back numbness is getting worse and feel like right leg was heavier last night. Have a appointment with my old family dr to see if they can tell me what is going on.  IF I look down towards my feet  I get that head pressure and if I press the back of my neck where it is swelled i causes shooting pains. I have begged the lord to help me or find someone that could. I feel like I am going to pass out at points I just hope they figure out what this is before something else happens.  
875426 tn?1325532016
Wow, sounds just awful- did you see your family dr. today I hope?  

Have they've ruled out spinal meningitis & encephalitis?

It really sounds like you belong in a hospital to me.

I hope you can get an MRA/MRV re:the small blood vessel bulge- wonder if it is a small aneurysm?
Avatar universal
Well got no where with old family  Dr last night told me after I got back to room sounds to complex has no recent records and have to reschedule with another dr ...and they would not even look at my neck or tell me why back is numb. I told them I feel worse and they said to reschedule.  I even told them it feels like my body is shutting down each day. Tried to spend some time outside yesterday with my daughter but the being outside in the bright light was making me sick and head felt real full of pressure. Going to try again today this is just making me miserable.  
875426 tn?1325532016
Hope you got more help this time?
Avatar universal
going back to see nerologist this afternoon hopefully he can help. I think maybe the neck thing could be causing the back  numbness . So hopefully he will be able to tell what is going on. I am miserable with this and need answers and thats what i am going to tell him today.
Avatar universal
I was reading all of your symptoms.  It's incredible how similar our symptoms are.  If I to this day look down at my feet, I will either get a severe dizzy spell or start to faint.  They were sure I also had Chiari and you are right, it is so hard to spot it.  I saw a show on a girl who they were convinced she didn't have it, they had to do surgery to find it.  It was on mystery diagnoisis.  I did not have Chiari, but did find a doc here in Vegas who wants to do a strange type of MRI...and have me place my head differently than other MRI's.  I was diagnosed at Mayo with Autonomic Neuropathy with orthostatic hypotension and something called crisis.  But what I found interesting with your blood work is that I too was told that I had high Epstein Barr count.  I don't even remember ever having Mono.  I guess this can happen to people who had mono and it can come back in this form.  I didn't really understand it.  But that's interesting. I did have a serious lung fungal infection a few years ago which made my neuro problems worse, but I always had issues as a child, this just sent it into a frenzy. The docs at mayo did say that the nerves coming out of the base of my skull were really swollen and recommended cortisone shots.  I did that years ago and it didn't do anything but make me dizzy.  But I still have lots of pressure at the base of my skull that just brings on terrible headaches and dizziness, sometimes nausea and blacking out.  If I use the upper muscles (my arms or back too much) or play sports, it makes it even worse.  Even putting ornaments on the christmas tree causes a serious flare up.  Waiting to go back to Mayo.  I hope you get some answers soon.   To give you some hope, I'm better than I was two years ago.  That was bad.  But am still hoping for some more health to come my way.  I still have many issues, but mine was being worsened by a fungal infection like I said, and also a toxic thyroid that had a tiny bit of cancer with it.  Once we got that fixed, I did start to feel like I was going to make it.  So hopefully they find something easy to fix! God Bless you. Feel better soon and keep us updated.  I'm really curious what they can find and do for you.
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