In pain and looking for Answers Newbie

[blaidlaw]

Hello Everyone
I posted a thread on Newbie and I think it shoulder of been put here/

I have been having for about 6 months "zaps" They are like little zaps effecting my left arm, chest and left eye. They lasted about a second. My zaps have changed now to full blown pain and burning. I get this "spells" 4 or more times a day even at night. In fact at night they seem to happen more often. They wake me up from a dead sleep. I have a room now called the pain room. I go there and curl up in a ball and wait for the pain to pass. Usually anywhere from 10-20 minutes. I would say on a scale of 1-10 they are about an 8.

When they first happened I thought it was a heart issue so I went to emerge and they did and ECG and a CAT scan and nothing showed up. So I figured that was it, they would go away. I got another one abut 2 weeks later and went back to emerge (I did not have a Dr. to go to) and they weren't not happy campers and told me to go home and take an Advil.

Anyways, I found a Dr. and I told him what happen and he kept saying I was afraid to die. It never was about dying. I just want to find out what this is and take the pain away. He decided they were panic attacks and gave me sleeping pills and antidepressants. Before I took them I look up the symptoms of panic attacks and I don’t have them.

When these attacks happen I do not have any trouble to breath, I do not feel like I am choking, I do not feel like the world is going to end, I am not sad, I just have the burning left arm, left hand, pain sometimes in the left side of my chest or pain in my left jaw or left ear. It is always a burning hand and shoulder and mostly the pain in my jaw or ear. Never in my legs or on the right side always left. My breathing isn't affected at all. I just want the pain to stop. The only good thing that has happened is I go to see a Neurologist on the 3rd of Jan and I am praying he has some answers and takes the pain away and gives me my life back.

I am sorry that I seem to be whining but I am just soooo frustrated that I don't know what this is. I am hoping by posting this someone will see my symptoms and will have similar ones and will know what this is.

My family history is my father died of a brain tumor; my mother has diabetes, heart disease, and glaucoma. There is a cousin who has MS but does not display any symptoms like mine.

I am sorry I wrote a book but I guess I need to get this out.
Thanks everyone
Barb

[Tootsie]

Hi Barb,
The symptoms you describe are both bewildering and frightening. No wonder that you feel so frustrated. Unfortunately, things like this are also bewildering to the doctors, and to have them seem uncaring only makes it worse.

Emergency rooms are designed, basically for people whose life is in danger, or whose pain is sudden in onset and unbearable, so anything that is recurrent or non-threatening to life, isn't addressed. It sounds like you have found someone to refer you to a neurologist and that is the best course to follow, at this point.

Frequently, unusual symptoms are associated with medical conditions that are not simple or easy to diagnose. The symptoms may appear long before any known laboratory, or diagnostic procedure can identify them. It takes perseverance and patience on the part of both you and your doctors to sort everything out. That may take months, several visits, and repetitive testing to compare the results.

You may want to ask on the Peripheral Neuropathy Forum, if anyone has suggestions. Rose is a frequent visitor there and has good information. Cheerio.

[blaidlaw]

Hi Tootsie

Thank you for your help and I am heading to the Peripheral Neuropathy Forum
and see what they say. I will try and find Rose.

Thanks again and have a great day
Barb

[Tbackpain1]

You might also want to check out the Spinal Disorders forum. Your symptoms sound very similar to those of a person with Cervical Disc problems. A series of Plain X-rays (AP, Lateral, Flex-Extension) of your C-spine could be a place to start. Good luck.

Theresa

[pab]

answered your other post....the two above here were two of my suggestions, the third was the thoracic outlet forum, good lluck

[Cry Tears]

Hi Barb. I'm glad you found BT forums. My life was saved through the wonderful help I received here.
Through my journey with my declinging health I've run across some pretty rotten doctors. But thankfully there are wonderful and caring ones out there too. Just have to find one who is caring and willing to listen.
Here's my story I thought you'd appretiate...will help you know that you aren't crazy....but need to find a good doctor.
Several years ago I began having a lot of dizzyness, shortness of breath, rapid heart beat, chest pains and extreme fatigue. I also was freezing cold despite it being a hot August day. After several weeks of this my husband drove me to the ER....I'd "fainted" a bit, so I knew something was terribly wrong.
I was so fatigued I couldn't really dress up...just went in very casual clothing, my hair a mess, no make up. In triage, they discovered my heart rate was about 180....thats over twice what it should be.
Right away the doctor classified me as a panic attack case....classic symptoms. Also diagnosed me with inner ear virus, thus causing my dizzyness and loss of balance.
The doctor, a woman, insisted on giving me Valium via my IV and Meclazene for inner ear. I told asked her if she would please do some simple blood work, that I felt warranted it because of my symptoms...that I didn't agree with her diagnosis of a panic attack.
She refused to do this...told me I was self diagnosing.
When the Valium got into my system I felt as if I was dying...it made me feel terribly weird....not the calming feeling you're supposed to get.
I pulled the IV out...then insisted she run just the basic labs.
Again she refused....telling me I was definatly having a full blown panic attack. I told her I was having chest pains as well....my chest felt very tight and "Funny". She did oblige me with an EKG....it only showed I had a rapid heart rate.
She came into my room to tell me she was through with me...that I was being difficult....nothing wrong with me other than a panic attack, for me to get my things and leave.
I was very upset by all this, but had no other alternative than to go back home. I bundled up with blankets despite it being 85*+ that day.
Every day I felt worse and worse. I was having a hard time climbing our stairs in the house. My ankles began swelling...and my chest pain was increasing.
I'd tried taking the Valium...but that only made me feel awful.
I'd driven my grand kids home...40 miles one way. On the way there I kept falling asleep as I drove. I just couldn't get enough rest these days!
Thought it was from the drugs I'd been given. So I rested several hours before I returned home that day. 3 miles from my grandkids home, I fell asleep driving my car...went across head on with several lanes of oncoming traffic. Thank God I didn't hit anything or anyone. But I thought I couldn't make the rest of the drive home. It took me several hours to get home. I'd stop and sleep every few miles. I made it home and went to bed. A few days later one night I was not making sense....I got into a huge argument with my husand... He insisted something was terribly wrong with me. I said well DUH! But the doctor said its just a panic attack!
I went to the guest bedroom way downstairs, locked the door, took 2 Valiums and went to sleep. I was mad because the doctor told me it was panic and I didnt agree...and I was mad at my husband...don't know to this day why! But that day I slept till late afternoon. My husband insisted I be seen by a different health care system. So I made the appointment my husbad had made for me...was angry that he obligated me into it.
When there they looked at me...said I looked fine, but heart rate too high. They did some blood work, looked me over...said all looks OK...sent me home. I had to stop every few miles to pull over and sleep. I got onto our hill...fell asleep driving up the steep cliff. Finally made it into our long driveway when my cell phone rang. It was the doctor. Told me to pull over immediatly, then asked my exact locatiion...they were sending an ambulance to get me, that I was in danger of dying any moment. Well.....it wasn't a panic attack that made me feel this way! Stupid doctor at Providence hospital would have found my problem had she just done the basics.
I was near dead from blood loss. My hemaglobin was 5.1 hgb...and hematcrit was 15%....thats not condusive with life. Not enough red blood cells to carry oxygene to the brain. I went into the hospital an hour later where they ran every test possible. 9 days later after numerous blood transfusions they released me from the hospital....couldn't find a single thing wrong with me.
2 years later....a nightmare I'd been "living" of having transfusions every two weeks...I could hardly stand my life. Now I was having panic attacks!
One doctor suggested they put my in the psyche ward for a week to watch me carefully to see if I was making myself bleed from somewhere. More stupid docs! They thought I was cutting myself somewhere! Oh yeah....like I was enjoying the attention of getting poked over and over....the fun of receiving someone elses blood afraid Id get hep C or AIDs....this was a virtual nightmare.
Finally...they had to open me up because the swallowable pill had gotten stuck in my intestines...but the battery died before leaving my stomach because I sometimes don't digest. So they couldn't see anything on the camera pill. Once they had me open, they removed several feet of small intestines because of Crohns disease. But the surgeon I had is a marvelous, wonderful, kind, very skilled man. He felt I was not bleeding at my diseased intestines. He spent an hour searching my inerds...found a baseball sized anuerism! BINGO! There it was bleeding away. DUH! No wonder my heart was beating that fast...trying to keep up and pump what little blood I had.
I was in grave danger of having a heart attaack and dying.
This doctor helped me write a very nice letter to that first ER doctor. Sent a photo of my baseball sized aneurism too! Told her that the source of my panic attack was found...that perhpas she should be a little more careful with peoples lives...not to jump to judging people with panic attacks who never had them...and do some simple doctoring such as doing basics. That perhaps she should take a refresher course in doctoring! Nice doctor!
So...I do hope they find that pinched nerve you have!
Perhaps take a copy of my post here to show them that perhaps they shouldn't be so fast with this panic diagnosis.
I'm sorry you are suffering pain and ran across stupid doctors so far.
Keep us posted here....we are like family around here!
Blessings, cheryl
PS...after they removed my small intestines....more stupid doctors forgot to tell me I needed B12 shots...duh! I got peripheral neuropathy by not having it. It nearly killed me....more stupid docs couldn't figure out why I was so sick, couldn't even brush my own hair. DUH! Where are they coming up with these dummies?

[Tootsie]

Barb,
I was responding to another post here and decided to look at the Arnold Chiari Malformation Forum here at braintalk. While waiting for that neurology appointment, you might want to take a cruise through that site and see if any of the symptoms or information seems to apply to you. Cheerio.