Still a Mystery

I am taking a new medicine. In fact I am taking two new medicines- one for my stomach and one to raise my blood pressure. Are they working? I'm not sure but my heartburn is gone.
I felt slightly ill yesterday. The symptoms typically begin in the morning, so I' m not sure about today.

My daughter scheduled an appointment with an internist for today. I'm not even 60 and my children seem to be taking over. She believes that none of the specialists will be able to uncover the mystery. I hope someone finds out soon. It has been three months of illness.

Beth

Still a Mystery

I woke up today, felt good for about one half hour, then the symptoms returned. Drank a glass of water to hydrate, a banana for the potassium, walked around felt better and the feelings passed.

I didn't leave the house for fear symptoms would return. My children call to see if I am alright, my husband calls from work- so far so good.

Tomorrow I have an appointment at 8:30AM at the cardiologist. New medication, another opinion. Hopefully there is help for me yet.

Beth

Another Episode-Could it be a seizure?

I was reading the New York Times and feeling a little out of sorts. (When I woke up an hour earlier I felt great). I layed down on the couch and kept getting sicker and sicker-stomach hurting , feet tingling , lips numb, bad taste in my mouth. I got down on the floor and put my feet up on the couch. I crossed my legs and tensed my arms as I read this might avert the fainting.

Well My heart started fluttering and my blood pressure was way low. I called my husbsand downstairs and told him call 911. I feel so badly when this happens, I feel as if I am dying. Vaso-vagal is not supposed to happen when you're lying down.

Everyone was very nice to me. I was really nauseated in the ambulance. My blood pressure was initially 70/40 but went up almost immediately.

In the hospital the doctor said what I have may not be vaso-vagal syncope but seizures, something I've never had. He told me to go to a neurologist and get tested. He said St Barnabus Hospital has such a facility where they keep you overnight and monitor you even while sleeping.
He also suggested stopping the beta blockers.

He was ready to discharge me when I started feeling ill again. He gave me a small dose of some medication to relax me. He said it was like valium and is also used to prevent seizures. I also had some lunch and eventually felt better enough to go home.

Time for me to research atypical seizures and then get back to you.

Beth

Here We Go Again

The day after Thanksgiving I didn't head out to the stores. Instead I went to th gym with my husband. I go to change in the locker when I started feeling sick. I took a book and my cell phone and decided I couldn't walk upstairs to the gym so I lyed down on the bench outside the locker room thinking I would feel better in that position and avoid passing out.

I lay there for about 10 minutes but I kept getting worse-all the same symptoms but this time my heart started racing. I tried to call my husband who was on the elliptical machine working out upstairs but he didn't bring his cell, so I called my step son at home and asked him to call the front desk and tell them a woman was ill outside the locker room. I went from the bench to the floor so I wouldn't fall and also so people would know I was in distress. It felt like I was having a heart attack. I was really afraid. I started breaking out in a sweat. I couldn't move, could barely speak and my head was hurting badly. A woman came by and I asked her to get my husband.

Everyone seemed to come at once my husband who held my hand, the fire department, two woman from the gym. A few minutes later the ambulance EMT's arrived. They took my blood pressure which was very low, sat me up and took my blood pressure again.. By this time I started to feel better and asked not to go to the hospital.. I had to sign release papers saying I refused to be taken to the hospital.

I still couldn't walk at this point and sat for awhile. The two woman from the gym were really sympathetic and got me a wheel chair. They brought me to the car along with my husband. I was shivering at this point and as soon as I got home I was able to go upstairs to bed where I stayed the rest of the day.

I really don't understand why I am getting so sick and lying down does not seem to prevent my attacks. What now? I ate before the gym. I took my beta blocker, but my heart started racing, I'm drinking lots of fluid. Nothing seems to stop the onset of the vaso vagal episodes. My doctor said this was a non life threatening illness but I felt as if I were dieing. I did everything I could to avoid it including relaxation techniques but my body took over.

Beth

Yesterday I had Thanksgiving dinner at my daughter's house and everything was lovely. But I find I am feeling tired and ill. Could vaso-vagal syncope be just a symptom of something more serious?

I wasn't stressed out, I wasn't exercising excessively. I did eat a lot but for me that's nothing new. (If your wondering I'm not overweight.)

I guess I'm going to do more research to find out the cause of my fatigue. So far the doctors don't seem to care about my quality of life issues. They are more interested in treating the fainting but not finding out why this is all happening. I realize they don't understand what causes this but I feel as they are not seeing me as a person.

I am usually very energetic and running around . I still do the same things but now I have to rest in between my activities. If I go shopping I can't go to more than one store in a day. So here I am writing my blog instead of running around shopping on the Friday after Thanksgiving.

Be Well

Beth

So Far So Good

I have not had an episode of passing out for a while now, not to say that I haven't had times of being weak and feeling crummy. I'm hoping the beta blockers are working. I still feel frightened when I am out alone and I've kept that to a minimum.

This morning we ran out of milk and I walked about two blocks to a grocery store, it was snowing lightly and I was walking quickly, all the time thinking that if I fainted I would be lying on the wet grass. Not a pretty picture, but I made it to the store and back which boosts my confidence.

I hope some of you who have experienced this syndrome will write and tell me of your experiences.

Thanks,
Beth

Weird Feelings

I went to the gym yesterday . My workout was short because I kept thinking that I might be experiencing symptoms of vaso- vagal syncope-tingling of feet, weakness , stomach ache.

A few times I layed down on the mat to ward off these weird feelings. My biggest fear is that if I do pass out that the staff will call an ambulance and I'll have to go through the whole nightmare of medical tests again.

I think I'll go to the gym everyday instead of every other day and just do shorter workouts until everything sorts itself out. I feel fortunate that I am able to do this much. Last week I thought I'd be confined to my house. Things are looking up.

Beth

Beta Blockers

I have taken 1/2 of a tablet of medication for 2 days now and my hopes are up. I'm feeling well, although still nervous about side effects or dropping dead of a heart attack.

Beta blockers work by slowing down your heart beat. This is counter- intuitive as that is the reason I faint in the first place. The reasoning is, if your heart doesn't speed up it can't come crashing down.

I'm hoping to get back to my normal self. Time will tell. I'll keep you posted.

Beth

Beta Blockers

I went to the cardiologist today and he prescribed a very low dosage of Beta blocker. Hopefully this will help me as my quality of life is not what I hoped when I retired in July.

I went shopping at Costco with my husband this afternoon and I had to leave the store to lie down in my car while he paid at the checkout. I wonder how this would have played out if I were alone.

My doctor did say I could drive because I don't have episodes while I am sitting. Tomorrow I will start medication and tell you the results.

Beth

Flight or Fight

I was watching the Today show on NBC this morning and this guy was attacked by a shark.. He said he didn't have to think about fighting back, he just did. He called it his fight or flight response. This is what goes amok in people who have vaso vagal reflex. Instead of the heart speeding up it slows down in certain situations. Then fainting or near fainting occurs.

I'm trying to go about my business, but I'm always nervous about collapsing. Tomorrow I see my cardiologist to see if he can give me some advice. Wish me luck.

Beth

Stress

Yesterday my son came over and was on the phone making a business call. It got a little heated and guess what? I had to lie down, my stomach was hurting , and I felt ill. Maybe all the fluids and salt helped because I didn't pass out and recovered quickly. Maybe I just recognized the sympmtoms and layed down fast enough. This is getting old fast. I missed going to the gym once again.

Stress, exercise and warm weather seem to trigger my episodes. I think I'll go have my high salt breakfast now.

Beth

High Salt Diet

I have taken the advice of my doctor and started a high salt diet. It sounds crazy but I'm eating chips with my breakfast. I just came back from the bagel shop. I bought a bagel with lox and cream cheese for lunch and salt bagels for tomorrow's breakfast. Good eating! Oh let me not forget the Gatorade.

Beth

Neurally mediated hypotension

Well, I have been doing some research and found these other names for my condition. They are:
vaso-vagal reflex
autonomic dysfunction
vasodepressor syncope
neurocardiogenic syncope
hypervagal syndrome.

What is mediated hypotension?

This may occur when there is miscommunication between the heart, brain and blood vessels.
(often in the absence of any structural abnormalities)

What situations can lead to symptoms?

Many unknown and known stimuli may provoke symptoms which may include:

prolonged periods of upright posture
physical exercise
unpleasant sights
emotionally stressful events
warm environments
large meals
bowel movements

Hope this info is useful.

Beth

Vaso Vagal Reflex Confirmed

Well I had my tilt table test today and it wasn't as frightening as I thought it would be. You are strapped down to a table with a blood pressure cuff on your arm,an EKG machine attached to you, and an IV pumping salt water into your veins. The table tilts almost upright. I stood like this for 20 minutes and I didn't feel ill, so they placed a nitroglycerine tablet under my tongue and as it disolved I started feeling sick . Arms and legs tingling, headache, and upset stomach. I told them and they immediately lowered the table. I started to feel better right away.

The doctor said this confirmed the vaso- vagal syncope as my blood pressure dropped and heartrate decreased. His advice drink a lot of fluids and increase salt in my diet. I see the cardiologist Friday and will tell you what happens. Meanwhile I'll be eating chips and drinking gatorade.

Beth

Tilt Table test

Tomorrow I am scheduled for a tilt table test. Does anyone know what this entails ? Will it be painful? Wil lI be sick the rest of the day? I would appreciate any comments on this.

Thanks

Beth

Vasovagal

I think my brain is working in slow motion I misspelled this syndrome and can hardly remember how to pronounce it. I am supposed to go out to a movie tonight and worry I'll pass out again. Every time I start to feel ill I have to lie down till it passes. I can only imagine if this happens in a public pace again.

Vasovegal

Sorry but I misspelled this in my previous posts. Now that I've got it straight I will search ggogle for more info.

Vaso Vega (Fainting)

Vaso Vega

I have this theory that vaso vega is caused by some traumatic events like surgery, so I have a poll for you to take. If you have had any other incident before the onset of vaso vega, please comment.

I'd really like to hear how your life has changed and how you are dealing with this fainting problem on an everyday basis. I am so scared now every time I leave the house.

My Mysterious Illness

I just retired from teaching after 23 years and expected to travel and enjoy life. Well that all changed about a month and a half ago. I have a country home in the Catskills and I was walking along the dirt road near my house enjoying the beautiful surroundings when I heard some animals and got scared. I turn around to walk back to my home when I see a big black bear about a block away from me. I waited a few minutes not knowing what to do-no houses , no cell, no husband(he's still sleeping). I decide to walk home as the bear walked into the woods. I didn't make it as I started to see a circular light in front of my eyes and tingling in my feet. I knew I was going to pass out so I walked to the side of the road and collapsed.

About 15 minutes later a neighbor driving along the road spotted me. She couldn't wake me and went home to call an ambulance. Then came the rural mailman in his car. He stopped, said he was an EMT, and took my pulse and said it was very low. The ambulance came took my blood pressure which was also low and my glucose was about 68, which I hear is also on the low side.

I went to the hospital where they checked my heart,chest x-ray, did a CAT scan of my brain and kept me overnight for blood tests and hooked me up to a heart monitor. They discovered I had a low thyroid and put me on 50mcg of levothyroxine, but didn't believe that caused my symptoms.What I didn't mention is that a few days previously I had a near fainting experience while working at the house removing old linoleum tiles.

When I returned home to New Jersy I saw a cardiologist, had a stress test , a cartoid doppler test of my neck, sonograms of my heart and everthing looked normal.. He sent me home with a heart monitor that I could place on my chest to see if the heartbeat was abnormal. You record your heartbeat, call a special number and they tell your doctor if something is wrong. Nothing ever was.

Well , I love going to the gym and the doctor said there was no reason not to go. However the next time I worked out I again felt ill and almost lost consciousness. Tingling in my feet and lips, white as a ghost, bright light like a circular saw in front of my eyes. Again the ambulance is called-low glucose 62, low blood pressure and pulse. I am now at another hospital, same tests but am released with directions to go back and see my cardiologist.

I go to the cardiologist who says I need to have a Tilt table test to see if my automatic nervous system is to blame for my symptoms. I also visit an endocrinologist who schedules an adrenal test to rule out Addison's disease.

In the midst of this I am supposed to go to Disney in Florida with my daughter, son-in-law and three grandchildren.. I reschedule the tilt table test for when I return from vacation. The vacation was rough on me humid, hot weather and as much as 12 hours of walking the parks.

The day I am scheduled to return home we get to the airport after returning the minivan to Hertz, hop on a shuttle. When I get to the airport I feel ill once again, feet tingling, stomach ache,bright lights. My daughter tries to put me in a wheelchair but I don't remember any of it. Someone calls the airport EMT and an ambulance. I am sent to yet another hospital where they keep me overnight repeat the same tests, plus the adrenal testand an MRI of my brain (I don't yet know that result). Again nothing. The doctor thinks I have something called Vasso Vega -I might be spelling that wrong. He says to take the Tilt table test and if I lose consciousness it will confirm it. He tells me that Beta Blockers help prevent the episodes in about 90% of patients with this disorder. I'll keep you posted.

I would love to hear from you if you have had a mystery illness too and how you were diagnosed or if you are still searching . Keep well.

Beth