Help! Undiagnosed and Scared

HI I LIVE IN TEXAS. HERE IS MY STORY.
My name is Jolene Rodriguez.
Sometime in November, One day I went out with my boyfriend, my sister and her boyfriend. At night we went back to my sisters' house. It was raining and I was driving. My tires skid into a puddle of water and I got a flat tire and I crashed into a pole. As I ran into the pole I felt my head and neck moved back and forth with great force. I never did go to the doctor that night. After the accident I felt fine. A couple of days later I had a minor cold. I had drippy nose and I coughed a lot. I coughed for several days and took medicine for the cold. One day I took medicine and went to bed. I woke up in the middle of the night feeling nauseated and coughed a lot. I threw up so much that I threw up blood. I was scared and my stomach hurt a lot. I went to the Dr. and I told him what happened and he sent me to have a test done over my stomach. I went back with my Dr. after I had my test done and he said I had acid reflux. He told me it was minor. He gave me pills for that.
After a week I felt normal again. My cold was gone. Around two days later I had the worst migraine ever. My migraine lasted all day. I took Tylenol and it helped a little. I also put ice on my head. After a couple days I started getting throbbing headaches. It was less painful then the migraine I had. My headaches hurt so much that the front of my head felt tingly and became numb at times. With my headaches I also felt a strong pressure on my chest. I felt like it was difficult to breathe. The pressure would go and come back in times whether I was at home, at school, driving, etc. My mom mentioned it was heartburn. While I felt this I would drive my car. For a couple of days I thought my car had a burning smell. I thought I smelt gas or something similar to it. While I was driving I felt like it was difficult to breath and my heart was beating really fast. I thought I was going to have a stroke. At times my hands became numb. I opened the windows but that didn't help. A couple of times I stopped driving when I was on the road and parked somewhere because I ran out of breath and could not concentrate on the road. At times I also burped a lot and had a strange taste in my mouth. It tasted like gas. When I burped I tasted it and smelt it coming out from my mouth. I told my parents and they drove my car for a week. They told me they felt and did not smell anything. They said the car was fine. I drove my car again and felt the same thing. One day I was at home and felt like I could not breathe. My parents took me to the clinic. The doctor and nurse checked my oxygen level and blood pressure. It looked normal. They also took an x-ray of my chest and an EKG. It all came back normal. I told the Dr. about the taste and smell of gas I had coming out of my mouth. I told them that I thought it might be carbon monoxide. He decided to do a blood test to see if it was a possibility. A week passed by and I got a call and my blood test came back normal. All I had was low potassium, but this was not anything major. I kept having the same symptoms. More weeks passed by.
I went to rent a movie one day with my boyfriend. Inside the store I felt out of breath. My hands started tingling, so we decided to leave. When we got in the car I felt lightheaded and out of breath, like someone was pressing hard against my chest. Beside my hands feeling tingly, I also felt my face, chest, and legs feeling tingly. It also felt like my veins and the inside of my body was cold. My boyfriend told me I looked very pale. I felt like I was going to pass out. So I told my boyfriend to take me to a different clinic then the one I went to last time. When I got there, once again, they checked my oxygen level and blood pressure and it all came back normal. They also did another x-ray of my chest and an EKG. These tests also came back normal. The Dr. told me what I had were panic attacks. He gave me medicine for my panic attacks. A couple weeks have passed by and I felt better. I learned to control my attacks. The Dr. said I had a lot of stress, even though I did not feel it. I told him I have a calm life. After the Dr. told me this, I dropped two classes out of four from college.
I felt a little better until one day, my boyfriend and I were at my house getting ready to go out to eat Chinese food at a restaurant. I had a bad headache and I felt my chest pressing again. The inside of my chest felt cold. All at once I felt like a lot of tiny needles from the top of my head falling down until I felt the inside of my head completely empty and numb. It felt like a balloon floating. My boyfriend calmed me down. From then my head has been numb. It is just the inside of my head. I felt like my head is going to fall off, so I held my head with my hand a couple of weeks.
One day I went to stay with my sister at her home. I began to have a headache so I went to bed. I tried to sleep but my headache got worse that it woke me up when I was barely falling asleep. I felt like pins and needles were scratching and cutting the inside of my head, esp. on the back of my eyes. I could not stand the pain. My sister took me to the emergency room. I waited about 6 hours and the pain was unbearable. I never cried so much in my life. When I saw a Dr., he put an IV on me because he said I looked dehydrated. He gave me pills for the pain and I went home. I took them and they sort of helped.
A couple days later, I felt pain around my eyes, cheeks, ears, and nose. I also felt like something cold was dripping from the inside my head. My mom thought it was mucus. She thought it could be a sinus infection. So I put on nose spray for about two weeks. The headaches got worse that I could not sleep at night. I decided to go back to the clinic and the Dr. gave me sleeping pills, Vicotin for the pain and he decided to give me a CAT scan to see if I had a sinus infection. I got blood drawn out to see if my thyroid was normal, to check my blood count, and for other tests. I took the pills and I felt less pain. I could sleep now at night. In about a week, I went back to the Dr. and he told me my CAT scan was normal. I told him I still have pain. I told him I felt like I had something thick and sharp, needlelike sensation, poking the back of my eyes and cheeks. It felt like something was pulling my eyes out. It was like wires were wrapped around my eyes. The Dr. told me he was going to do an MRI. I went to have my MRI done and I did not get my results until two weeks later. During one of those weeks, I went to vacation with my family. When we got there my head started to hurt horribly, painfully bad. I felt that I had something falling from the top of my head. It felt like many sharp pins and needles, at once, were falling and piercing and cutting all the way through the inside of my eyes, nose, the sides of my ears and my tongue. When I felt this, it also had a burning sensation. It felt like the inside of my head was on fire. I had this feeling all day and all night. The pain was so bad I was shaking and could not stop crying. The next day in Mexico I decided to go see a neurologist. He told me based on my symptoms that it sounds like it could be epilepsy with a complicated migraine. He sent me to the hospital to do an MRI and to have an EEG. I did these tests and went back to him. He told me everything came back normal. I told him I felt the inside of my head completely empty and numb, like there was just a hole inside my head. My head felt wobbly. I also felt like a lot of tiny needles were falling down from the top of my head. When this happened I felt the needles or whatever sensation it is giving me shocks or static, or electricity. I felt the shocks inside my head and also at the bottom of my feet. It felt so weird and painful. The Dr. told me, once again, based on my symptoms that the closet thing I could have is epilepsy. He thought I might get seizures. He gave me medicine. He gave me Topomax and Keppra for epilepsy and some medicine for the pain.
When I got back to USA I went to the clinic for my MRI results. The Dr. told me my results came back normal. He told me to not take anymore of the medicine I was given in Mexico because I do not have epilepsy. He said this medicine was not necessary and it could ruin my digestive system. He sent me to have a urine test and I had a minor infection. He gave me pills for that. He also gave me Floxentine pills. He thought that everything I had was caused by stress, but I believe its something else besides stress. He said he was going to fax some papers so that I could see a neurologist and have an EEG done. I still have not seen a neurologist nor have my EEG done yet. But I should soon.
I only took the pills the Dr. gave me for a couple of days because my stomach hurt a lot. I also lost my appetite. I hardly ate food. I also could not sleep during those days. I went back to the Dr. and he told me to stop taking all the medicine I was given. He gave me Nexium pills for my stomach. He told me not to take any other pills except Tylenol or Ibuprofen for my headaches. He also drew blood to see if I had any stomach problems. I started taking my pills and my stomach felt better and I could sleep at night now. Since then until now I have felt different sensations inside my head, but being completely numb and empty. My head has felt completely numb for around two months. Some days I felt like there were wires inside my head. I felt like there were pins and needles, I felt like my head was on fire. I felt like I had air or my head was cold inside. I had a sensation like wires were pulling my skull or my head out of my head. I had a sensation like water falling from the top of my head. It felt cold. I also had itching and tingly sensations inside my head. Almost everyday I have different sensations inside my head. Some days I would have ringing in my ears and my vision would see white spots for just a second.
Recently, my head feels like the numb sensation I mentioned. I am sometime still feeling like the sensation that something is falling from the inside of my head, sometimes a cold sensation. This sensation I have also felt in my neck and now I also feel my neck empty or numb. With this my neck hurts a lot. It feels like my head is heavy and wobbly and makes my neck and shoulder hurt. I felt pressure that was squeezing my whole head moving around and also squeezing the back of my neck. I felt so much pressure I felt light headed and nearly passed out. I also feel like my body feels heavy, like it is tired.
Now it is July 2007 and I have gotten new symptoms. I get chills at night inside my whole body and sometimes during the day, I feel congested, my chest gets really tight. My throat also hurts. Sometimes I can't swallow my food. My throat feels like it wants to go to the back of my neck. I also can't sleep because I have to wake up every 20 min. to go to the restroom. I think I have a bladder infection. Some days I couldn't sleep the whole night because I felt like I had water trapped inside my chest, I tried to sleep but I felt like I couldn't breathe and it woke me up over and over again. I burped a lot for days and nights. I also have ringing in my ears. My ears hurt sometimes too. My work had a health fair and I had a test done for my ears. I had to do a balance test and I had to close my eyes and I feel over to the side twice. So the Doctor told me I might have a severe ear infection and that I should get it checked out. One day I freaked out at work because I had a lot of pressure in my head and I felt like a pop sensation, like it was expanding and I had the sensation of something cold falling from my head. After that I have gotten big horrible headaches and a lot of pressure in my head. It feels like a pump, pumping air into my head and it just wants to shoot up. My neck hurts a lot. It feels strain, wobbly. I think my head has so much pressure because of my neck feels weak. My head shakes a lot and when that happens my body does too. I went to the Doctor again and he gave me tests to see if I had a throat infection and a bladder infection. He told me I did have a minor infection in my throat. But he also told me I had a severe bladder infection. I told him how I have been feeling. He set up an appointment so that I could see a throat and ear specialist. He also set up an appointment so I could have an EEG. As I mentioned before I saw a neurologist before and he told me I had stress and it would go away in 3 weeks but it has been longer and I felt like I have gotten worse and that is why I have not got an EEG done before. So the doctor gave me antibiotic for my bladder infection and just in case I have an ear infection.
Today it is July 26, 2007 and around 7:00 p.m. I went outside to walk around the block with my boyfriend. As I was walking I felt my head very cold and had a sensation of something inside my head dripping down like liquid and I freaked out. When I felt this, I felt my head getting number and air pushed inside my eyes and all around my head. It felt like a balloon expanding and when I felt something moving around and falling down from the top of my head. I felt a lot of pressure on the back and on the front of my head. My boyfriend carried me home.
I still have a sensation like something cold and lots of it dripping from the inside of my head. My head also have a lot of pressure and also around my eyes. I also have pressure around my nose like someone wants to pull it off. I have so much pressure on the back of my neck it feels like my muscles are squeezing really tight and it also feels like its squeezing my throat and it sometimes it hard for me to breathe. My ear also hurts like its throbbing and also I feel like my eyes are burning. I also wake up exhausted, like my body is detached. I can't stand the pressure in my head and my eyes anymore. My head feels really heavy all the time, like it is a bobble head, like it is heavy and going to fall off my shoulders. The top of my head to my neck tingles and it feels like my head is detached from my body, floating above my shoulders, difficulty breathing, head pushed forward to breathe. I get this fluttering feeling in my throat-low down close to my chest and it is difficult to breathe. I feel a warm wet sensation in the top right part of my head; it feels like a liquid seeping out inside my head. I also have pressure in my face and sides of my head feels like its raining, like drops of water rolling down your face.
I already went to the Dr. and had a 2 hour EEG done and he said it came out normal. I also have a urine test. I have another severe bladder infection. All the Dr. gave me was Floxentine medicine and antibiotics for my infection. I only took these medicines for 3 days and then stopped them. I got diarrhea, abdominal cramps, and a fluttering swollen throat from the medicine. I feel dizzy all the time, even though I do not take any medicine. I have a lot of pain and pressure inside my head and around my neck and spine. My head feels like it wants to explode.
It is September 27, 2007 around 3:40 a.m. and I can not sleep. I woke up feeling weak. My body is shaking and the inside of my chest feels really cold. My stomach hurts with a lot of cramps and I am really thirsty. After a while my whole body aches and then I feel my body really hot inside. I feel my heartbeat pump really fast and then it pumps really slowly. I try to go to the restroom but it is really hard to, so I try not to anymore. My veins feel really cold. My head is shaking inside. I feel like I can hear moving waves inside my head.
It is now February 08, 2008 and I feel worse. My head is so bad it feels like it is tearing apart inside. It feels like a balloon that is blowing up and up, to the sides and all around and suddenly it pops and water or something cold just falls to the back of my head. When this happens it feels like it is pulling my spinal cord or something close to it up and then down. I also feel my body shiver and at the same time the pressure is pulling my neck. I feel cold and then a lot of fire heat around it. I feel like I need to put something around my neck to hold it because my nerves around it hurt so badly. Every time this happens it feels like something is tearing the inside of my head more and more. I still feel like something is dripping cold from the top of my head to my neck. I feel a lot of pressure around my eyes and it feels like they want to pop out.
JUST NEED ANY KIND OF INFORMATION TO GO TO ANY HOSPITAL ANYWHERE AROUND THE WORLD. WHAT OTHER TESTS SHOULD I TAKE?

By dizzybee
Posted November 21, 2008 at 4:54 pm
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i'm w/ everybody else, it sound like you have some type of traumatic brain/spinal cord injury.

another site www.neurologychannel.com -- they have a place where you can locate a doc in your area.

But do not delay in getting this taken care of. It sounds as though it is very serious and affecting many different functions in your body.

I'm praying for you!

By Nina372
Posted November 21, 2008 at 1:10 pm
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Dear undiagnosedandscared,

I understand how it feels to have severe symptoms and not have a diagnosis.
For four years I struggled with many symptoms that I thought were just unbearable meanwhile doctor after doctor just kept telling me it was a mental illness known as a conversion disorder when I knew that couldn't possibly be the case time and time again I would tell them that I thought something was really wrong with me till one day it got so bad my mom put me in the car and drove me to the mayo clinic in AZ well to make a long story short after a very long four years with no answers I finally got a diagnosis.
I would highly recommend going to the mayo clinic in AZ.
I will be praying for you
- Nina

By BWR
Posted November 20, 2008 at 10:44 pm
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Jolene,

Did you have the MRI done with contrast dye??? MRI's with contrast would show even the smallest areas of any inflammation you may have in the brain or brain stem area. Many people develop Autoimmune disorders following automobile accidents and other accidents where they sustain certain injuries. Autoimmune diseases or disorders are all about inflammation and are treated with steroids of other anti inflammatory drugs. Many of these Autoimmune conditions do attack areas of the brain. Do some research on Autoimmune diseases and disorders so you will understand exactly what they are and how it is believed they generally occur. If you did not get the MRI with contrast dye you need to request that your doctor schedule you to have one. Make sure you do not have any preexisting Kidney conditions prior to the contrast MRI. Check with your doctor concerning this. The contrast dye could create major issues for you if you have certain preexisting Kidney illness. Also, I would have some very extensive blood work done checking for the lack of or excess of certain antibodies.

Based on your symptoms and if a new MRI with dye shows any significant amount of inflammation in your brain, you may possibly have developed some Autoimmune disorder that has attacked some part or parts of your brain. Again, many people develop these Autoimmune disorders after automobile accidents.

Google for a list of Autoimmune diseases or disorders and I am sure you will find some things you recognize. Things like epilepsy ,MS, Sarcoidosis , RA and the list goes on and on.....

Since no doctor,at this point can tell you what is going on with you, it will do no harm if you ask them if the possibility exist of you having some Autoimmune disorder. If they laugh it off and completely discard this possibility without testing you, then you need to find another physician. Point being, if they cannot diagnose you then how do they know it isn't Autoimmune related??????

Don't give up, keep digging and we'll keep you in our thoughts and prayers..... God Bless you...

BWR

By anglesrus
Posted March 20, 2008 at 9:24 pm
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Jolene,

If you plan to go to a chiropractor make sure its a holistic chiropractor. There is an amazing holistic chiropractor here in IL. that has done amazing things for people that were suppose to go in for surgey. Her name is Dr. Dye. 217-223-6170. Please know that if a doc. is not believing you then you need to go to a doc. that can and will. Stay with it and dont give up! God will shine light!

By Suest
Posted March 1, 2008 at 12:41 pm
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Jolene,

Thanks for the update. I truly hope you get some help soon.

I wanted to warn you about chiropractors. There are 2 different kinds, the first kind is the honest ones who really want to help you and the second kind is the one who looks at you as a money machine. Thank goodness, most fall into the first category but I am going to tell you about the second kind.

If on your first or second visit the chiropractor tells you he can help you but it will take a long time and offers you a deal in the way of a contract for a year, where you get a reduced rate on visits by paying a flat fee of maybe $3000.00 in monthly installments, don't walk, run out of the office. According to one of the good chiropractors and my pain doctor, a good chiropractor will not know if he can help you until about 3-4 weeks and will know for sure he can help you in 4 to 6 weeks. I have been to both kinds.

The first one did some mild work on me because of the pain, and in about 4 weeks he told me that he didn't think he would be able to help me very much. If I wanted to continue to try for another couple of weeks to see if anything changed, it was up to me and he would be honest and tell me if I was wasting my money. I was desperate and did go back for a couple more weeks and the chiropractor told me that, I may be feeling better right after I left his office, but it was only lasting for a day or two and it was only because he was relaxing the muscles, not because he was helping the problem. He told me I could probably get the same effect from a good muscle relaxants and it would be a lot cheaper.

The second kind did this big examination on me, took x-rays, told me my neck was a mess and that I did have arthritis in my lower back. She went onto this long explanation about it took my back 53 years to get this way and it was going to take it a long time to get better and it all made good sense at the time. My boyfriend signed the contract and I started going 2 times a week. This was a family practice, both husband and wife were chiropractors, but I didn't see her do much in the way of adjustments. Her husband started doing adjustments on me. After about 3 weeks, I asked why he was only doing my lower back when his wife told me my neck was a mess too, so he would spend about 3 minutes on my back and about 30 seconds on my neck on each visit. After each adjustment my back would hurt much worse than before the adjustment. After about 8 weeks I asked him why my back hurt so bad after the adjustments and he explained my back was used to being out of alignment, and it would hurt for awhile until my back started getting used to being back into alignment. Meanwhile, I started canceling one appointment a week because it would hurt so bad after each treatment that it would take me 3 to 4 days just to recover from the visits. Around the 18th visit he gave me an adjustment that hurt so bad I let out a scream, he yelled at me that it didn't hurt that much and that I was a wuss. I barely made it out of there on my own 2 feet and never went back. I decided to go to a pain doctor. As it turns out, when I started going to the chiropractors I didn't have any disk problems, but as soon as I started going to the pain doctor, my Tarlov Cysts had grown dramatically and I had a budging disk. Now I can't prove it was the chiropractor that caused the budging disk, but I know in my heart it happened at that last visit.

Oh, one last thing my pain doctor told me, a chiropractor should never cause pain, you may experience some mild discomfort during the adjustment, but it should never be painful and it should pass before you leave the office. So, ask your chiropractors up front, will the treatments hurt? If he says no and they do, ask him why and if he doesn't give you a satisfactory answer or it keeps hurting you are with the wrong one.

I hope this helps.

Sue

By undiagnosedandscared
Posted February 29, 2008 at 1:12 am
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Thanks everyone for your support. I still have pressure and pain inside my head, thunderclap headaches. My face swells up and I have been having chills from the inside of my body for this past week. I went to the Dr. today and told him how I was feeling. He checked my ears and nose and said I looked fine. Then he took a swab test for my throat and it was negative.After that he pressed on my back, neck and shoulders and I told him it hurts so bad. He gave me muscle relaxants and medicine for the pain. He believes I have severe muscle tension. Right now I am going to take those pills and go back in a week. I also got a copy of all my medical records and am going to send them to a chiropractor for a second opinion.

I hope everyone to get better.

Jolene

By Suest
Posted February 27, 2008 at 3:38 pm
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Hi, it’s been about 2 weeks since we have heard from you, and I am sure that I speak for many others here when I say I am worried about you. It is one of the nice things about being on a board like this, people actually care about you.

I was wondering how you were doing? Have you had any new symptoms or have any of your current symptoms lessoned in intensity?

Please keep in touch and let us know how you are progressing?

You might even want to see a therapist due to all the stress not knowing what is wrong could be causing you. Believe me, and I am sure there are many more like me, it is very stressful when you don't know what is wrong, or no one believes you when you tell them what you think is wrong, and you beginning to think you are crazy. Most of us understand that.

I am keeping you in my prayers.

Sue

By foreverinbluejeans
Posted February 23, 2008 at 6:12 pm
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Wow! It must have taken you a long time to write your complicated history. I think it may be easy to place blame on the accident because that is where the "story" started.

Jolene, you sound like a young woman who is concerned about everything that doesn't feel right with your body. Don't underestimate the effect stress can have on your body. Seeking out psychiatric care to deal with stress and anxiety may be a big help. Psychotropic drugs can also help with preventing migraines.

Instead of trying to pay attention and describe when you don't feel well, next time try to ignore it. If you head hurts, just get busy with something and ignore it. People do it all the time. Women have babies without pain medication. You can try to learn some of those techniques. If there is nothing that can be done to fix what is wrong at the moment, you can learn how to live with it. Many of us with rare diseases have don it every day.

By cbates
Posted February 19, 2008 at 9:51 am
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Jolene,

Could this be Tolosa-Hunt Syndrome?Ask the National Headache Society by googling them.

My post here is actually a response to your original story and not to the above comment about your vertebra. I must admit that my first reaction to your story was the same as those who feel it must be a result of some sort of trauma to your brain as a result of the car accident. So I am hoping you'll see a neurologist. But perhaps this syndrome can be a condition co-occurring with something else you have.

As it is with so many of us who respond here, this is not the area my family's illness falls in nor an area that I or mine have experienced. But I search the medical resources areas including this one ceaselessly looking for help. Obviously, all of us do and in so doing, I ran across something on Discovery Health Channel last night and thought of you. I

In rechecking your story of your symptoms, there seems to be a huge crossover there with a condition called Tolosa-Hunt syndrome which is a huge inflammation of cavenous sinus behind your eyes.

This causes vomiting, acute eye pain, blurred vision, face pain , irritation of the facial nerves and facial numbness and eye movement control. The woman in the episode began with intense eye and face pain and unstoppable vomiting. Good news is it can be treated easily with steroids for the inflammation and isn't fatal. It's worth a try but will take an MRI or CT scan apparently and a doc who is looking for it. Good luck on your hunt.
momofmany

By LexVanDerHeijden
Posted February 18, 2008 at 3:43 pm
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Joelene,

Did any doctor check the position of the vertebras esp. in your neck area? They might be dispositioned and nerves might be stuck causing all kinds of strange problems. Did you ever have manual therapy?

Lex van der Heijden

By Suest
Posted February 17, 2008 at 2:22 pm
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I think a few of the people here have come up with some great ideas. Since it seems that all of your symptoms started right after the accident, it would stand to reason that the accident had something to do with all your symptoms.

I see two possibilities, a brain injury and a whiplash. Each would explain most of your symptoms and both would describe all of your symptoms. When your head jerked forward and back in the accident your brain moved inside your skull, if your brain hit your skull hard enough to bruise it, you have a concussion. I hit my head one time when I was reaching for something inside the fridge, when I went to stand up, my head wasn't all the way out and I hit my head. I felt fine for a couple of weeks. Then one night I had a beer and I had one of the worst headaches of my life. I discovered that alcohol and caffeine would cause these terrible headaches. About a week later I felt like I couldn't breathe, I was taken from my job via police car (I was a police dispatcher) to the hospital. Since it had been over 4 weeks since I hit my head, I didn't even think of it. The hospital pumped me up with valium, told me it was stress and sent me home. I couldn't believe it was stress, so I went to see my own doctor the next day. I walked into his office, sat on the exam table, started to describe my symptoms and from across the room his first question to me was "When did you hit your head?" I was shocked!
He put me on a strong dose of an anti-seizure medication and set me for a cat scan and an EEG. He told me no alcohol or caffeine and after a year he started to wean me off the anti-seizure medication and the seizures stopped. He told me that injuries to the brain can take a long time to heal, but he didn't think the damage would be permanent and he was right. That was 30 years ago.

A whiplash would also explain the sensations you are getting in all the other areas of your body.

Also, be careful of Topamax. I was put on that for nerve pain due to some Tarlov Cysts in my Sacrum. On my next visit to that doctor, she told me my reflexes indicated some stenosis in my neck and asked if I felt any numbness or tingling in my hands. I said no and she renewed my pain medication and increased my dosage of Topamax. My next visit I told her she wished the symptoms on me, that I was starting to get some numbness and tingling in my hands. She laughed and increased my dosage of the Topamax. My next visit I told her I was getting concerned, I was getting a lot of twitching in my hands and the numbness and tingling had moved all the way up through my arms. She ordered an MRI and increased my dosage of Topamax. (All these increases were a week a part.) My next visit I told her no one called me about an MRI and now I couldn't wash dishes because I would keep dropping them and I couldn't even type because the twitching was so bad. She ordered the MRI while I was there and increased my doasage of Topamax. My last visit, she renewed my pain medication for 3 months, told me the MRI came back normal and if I still had the symptoms I must have a brain tumor. I went home and called my pharmacist, and asked him about the Topamax. My pharmacist told me that it sounded like one of the rarer side effects of the Topamax and that I should take myself off of it, decreasing the dosage every couple of days over the course of 3 weeks. Unfortunately I only listened to half of what my pharmacist had to say and took myself off of the Topamax in a week. A few days after I was off the Topamax all of my symptoms went away, however my rapid detox from it caused me to have a psychotic event, in which I went crazy for about a week and was almost committed to the phychiatric unit of the closest major hospital.

I stopped seeing the doctor because I felt it was her job to know all the possible side effects of any of the drugs she was prescribing and not scare the "bleep" out of me by telling me I must have a brain tumor. And I could kick myself for not listening to the pharmacist. .

I wanted to tell you about the Topamax because it can be true of almost any of the anti-seizure drugs.

Good luck and I will keep you in my prayers.
Sue

By iaut2laff
Posted February 17, 2008 at 12:21 pm
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Jolene,
I'm sorry you are going thru this... have you considered going to an endrocrinologist? It may be a long series of tests to rule out many things. I'm guessing that you'd want to rule out any metabolic issues (seeing a Metabolic Genetic Specialist... but they'd need tests to show high levels of glutamine or orotic acid or so on to indicate a Urea Cycle, for example... I'm NOT suggesting you have this, BTW.) but an endrocrinologist can scan for tests like this.

Here is a quick link to the RDCN for top rated hospitals and specialists:
http://rarediseasesnetwork.epi.usf.edu/

If you click on a disease (again... I'm NOT suggesting you have one) you will see names and contact info for top specialists. We have a Urea Cycle Disorder and our specialist is Dr. Brendan Lee at Texas Children's Hospital/Baylor College of Medicine in Houston, TX.
HTH,
Pat

By psjaquith
Posted February 16, 2008 at 2:19 am
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Joyce has nailed things right on the nose. there could be a compression at the base of your school and some of the things you described certainly sound seizure related. Even the tingly feeling.

I had a brain tumor and it caused a lot of the symptoms you are having now because there started to be fluid accummulation. My first MRI's appeared normal other than the brain tumor. It was successfully removed; however, there is still injury to the brain from the surgery with scarring in the staging area. Because of this injury, I am now epileptic. The doctor you saw in Mexico was very astute. Even without seizures, my brain sometimes has that tingly sensation and sometimes feels like it's going to bulge out, I have migraines, the neurologist thinks maybe there is fluctuation of cerebral spinal fluid. This could be your case. I'll have to be tested to confirm his thought through spinal tap.

There are different types of seizures. I have a weird smell that I can smell which smells more like fingernail polish remover and I can even taste it in my mouth. It is just an aura caused by either a seizure or impending. Not all seizures knock you out, those would be Grand Mal, with petite mals you know what is going on around you and can even respond. Sometimes things are a little abnormal feeling. Sometimes I get into an uncontrolled crying jag to find that this is a type of seizure, most often my body will start twitching and jerking, usually just on one side and my head has uncontrolled movement. This is something through the seizure I can't stop and it frustrating to me not to be able to control my own body. I have had another sensation which is like Alice in Wonderland. I'll stand and when I look at the wall, it looks and feels like I am shooting up in height and the walls are shrinking. Another type of seizure.

The brain does a lot of different things, altered smell, altered taste (had that during the tumor), so as Joyce said, it would appear that you have suffered a brain injury and have had or having seizures. I do get crushing migraines; however, this is not always seizure related...but, still from brain trauma.

I love the links Joyce sent you! (Way to go Joyce!!) I hope you get the help and treatment you need soon. In the meantime, don't be discouraged!

Joyce, my neurosurgeon was wanting to send me to UT for my crainiotomy. They have developed a laproscopic procedure for resecting tumors. I didn't get to go since mine reached brain stem...but, sounded like they had some very promising things going on! I'm in Central Texas.

Penny

By joyceg98
Posted February 15, 2008 at 2:29 pm
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What you are describing is pretty typical of a brain injury. You need someone to look at your HEAD, not your abdomen. There are doctors who specialize in brain injury -- sometimes called traumatic brain injury, or mild traumatic brain injury. You can injure your brain by falling down the stairs, falling off a horse, or playing football just as easily as in a minor automobile accident such as you describe.

Changes in the way you smell things is a symptom, too.

From what you are describing, you should see someone soon. Do not delay. I know you have tried, but as you describe, you have not yet gotten the right level of attention.

Go to a large teaching hospital (e.g. UT Dallas or Baylor) and ask someone in neurology to evaluate you for possible Traumatic Brain Injury (TBI). Brain injury tends not to get the respect it deserves because you don't have anything obvious -- like a cast on your leg -- but there's an injury nonetheless. And as you have experienced, the symptoms can be in various parts of the body so doctors are often misled. But so many veterans are coming back from the war with TBI that there is a rise in recognition of this syndrome -- just obviously not among the doctors you have seen.

There's an excellent book on this topic by Diane Stoler called "Coping with Mild Traumatic Brain Injury". That's for later -- for now, you need action.

Here are the most direct links I could find.
http://www.baylorhealth.com/locations/bir/brain/
http://www.brainhealth.utdallas.edu/clinical/brain-injury.html

If you are not near Dallas or Houston, choose the next nearest large teaching hospital and search on the internet. I went, for example, to utdallas.edu and searched for brain injury.

Here are a few links for background:

http://www.windsongtherapy.com/Treatment/Care_Services/Brain_Injury/br ain_injury.html
http://www.dshs.state.tx.us/braininjury/docs/GapInServ.pdf
http://www.doereport.com/displaymonograph.php?MID=92
http://www.redorbit.com/news/health/555633/a_survey_of_mild_traumatic_ brain_injury_treatment_in_the/index.html?source=r_health

All best wishes,
Joyce

By RyeMom
Posted February 15, 2008 at 1:17 pm
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I just read your story. I have heard of something called: CPH or chronic paroxysmal hemicrania. I guess there is a "headache specialist". Maybe you can try that?

By ladkins
Posted February 14, 2008 at 12:26 am
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The first thing that comes to me is that this was caused by your accident. It could be either physical or chemical in nature. I would check in the areas of nerve damage, taking foods and supplements in addition to therapy to heal.
Or...Sometimes a traumatic event can trigger a chemical reaction. If you were already deficient in maybe serotonin...or another regulatory chemical/supplement/amino acid... for the brain or nerves, then this could have been triggered by the accident or such an event. Many of the things that you describe that are being done for you medically are just attempting to cover-up the symptoms, not actually addressing, or pinpointing the problem.
Have faith, God be with you.

By Kyla
Posted February 13, 2008 at 3:30 pm
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Im not medical expert and there may well be a physical medical connection with the car accident - and i think its really important that you emphasize the accident when you see the experts. Some of the other symptoms though sound to me as though they could be linked to hyperventilation syndrome. its to do with your breathing . In hinesight i think I may have had it at one point. and was convinced that problems with my eyes were because I was hyperventilating. turns out what i have is very rare but fortunately not serious. Hysperventilation syndrome is not widely recognised and people can be seen by numerious doictors before it is diagnosed. It produces a whole range of symptoms. It can be caused by stress - maybe the stress of the car accident ? Tingling is a very common symptoms. And you mention a lot of that . surf the net for it. At the end of the day though it produces endless symptoms one can control it with help to breath properly. Dont think Im belittleing any of your symptoms, im not they are very real. Stress itself can cause very real symptoms. I know as Ive been admitted to hospital with what in the end was probably just stress realated. Such syptoms can be very scary and are reall. Its amazing how the body reacts to stress. have you had any councilling for trauma after your accident ? I have cut and paste an extract about hyperventilation syndrome there is lots about it. Let us know how you get on anyway it your search for answers. You are in my prayers

kyla

Hyperventilation Syndrome
Hyperventilation syndrome is one of the most common causes of dizziness in the general population, accounting for up to 25 percent of dizziness complaints.1,2,7 Hyperventilation syndrome may present a diagnostic challenge to the chiropractic physician because of the diverse symptomatology associated with this disorder. One of the most valuable clues to the diagnosis of hyperventilation syndrome is the simultaneous occurrence of puzzling combinations of diverse symptoms (cardiovascular, neurological, respiratory, gastrointestinal, musculoskeletal, and psychological) in association with ill-defined dizziness. Dizziness attacks are caused by overbreathing which is triggered by anxiety or related emotional disturbance

By walter_comer
Posted February 13, 2008 at 12:33 pm
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It sounds like you need to find out who the experts on brain and spinal chord injuries are, since you "whipped" the way your did during you accident. They will be more knowledgeable about detecting injuries other doc.'s may miss. Personally, I agree with the mayo clinic idea. A team will work together using every source possible to diagnose and treat you.
Another idea for finding facilities is "Yahoo Answers": http://answers.yahoo.com/ You can ask any question there and many people will respond. Since there's such a large group, you're likely to hear ideas that haven't been explored.
Keep us posted, please.
I'll keep you in my prayers.

By barbwoldin
Posted February 13, 2008 at 9:42 am
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Jolene,

In the beginning of your story, you mention about the accident you had and then nothing more is said. Have you told all the doctors about this and have they checked thoroughly for any kind of damage? Could you have broken your neck? Have they checked for Arnold Chiari or problems with the brain stem, benign cysts?

Hope you find some answers.

Barbara

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