UndiagnosedCondition

0 Recommendations

HI I LIVE IN TEXAS. HERES MY STORY.

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.

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 July 26, 2007 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 paind 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 firey heat around it. I feel like I need to put something around my neck to hold it because my nerves around it hurts so bad. Everytime this happens it feels like something is tearing the inside of my head more and more. I JUST NEED ANY KIND OF INFORMATION TO GO TO ANY HOSPITAL ANYWHERE AROUND THE WORLD.

10 replies

I don't think it could be the only problem that you have, but you really need to check on the bladder infection, and not stop taking the pills until you finish the course, as you may set up a super infection that is becoming resistant to antibotics. I have taken some pills that have the side effects you mentioned, but maybe you need to just be given a different one. I lot of the systems with the dizzyness and headache could be coming from this

Hope this helps and good luck

Margaret

I asked a hematologist/oncologist I know at Mayo and he suggested a general internist diagnostician at either University of Texas Medical Center or Baylor. He had no names but
if you go into their sites you should find some.
Good Luck
Muriel
Amyloidosis Support Groups Inc.
ASG www.amyloidosissupport.com

Get an MRI with dye? They will find out what's the matter with you in the head. I suffer from an AVM (aerterialvenous malformation). Which I had been shot three times bye radiation to strengthen the vessels. It sounds like the same problem I was having until my neurosurgeon back in 1981 went on a covention to Texas and he had found me some cures for my sickness. What I have is an (AVM) which is a birthmark in the middle of my head. They can not do exterior operations on me, so they go in with a beam to strengthen the vessels.
Let me know if this is any help.

A negative EEG does NOT rule out seizure activity. The symptoms you describe in your second paragraph sound like simple partial seizures. There are many causes of seizures, and sometimes doctors just don't know what it is for a particular person.

Often doctors can only "guess" at an epilepsy diagnosis based on your symptoms. How you respond to medications tells them a lot about whether or not they've guessed right. If the anti-seizure meds help, then you probably have some form of epilepsy. If they don't help, then the doctor has to consider other possibilities.

The best thing you can do is to document everything and keep pressing for answers. If one doctor can't help you, keep looking.

Also, the NIH has recently started a program for people whose conditions defy diagnosis:

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

Good luck to you!

I am concerned that you might have a leakage of cerebrospinal fluid, which might explain a lot of the head symptoms. Be sure to have that checked out, given your history of head injury.

If you haven't had an angioplasty tell your Dr. you want one. They go up through your groin and the dye pinpoints the area in your brain that is affected. I hope it helps. It did for me.

Mimi

Thanks for the information.

On Sep 30, 2008, at 12:10PM
Hi undiaggnosedand scared
My Name is Shelly and I know all to well what you're going through as i was told the same thing many times but now have a Wonderful Neurolgist in Houston, if you can get there since your so ill as flying is a no no that's why I am late with my check up besised both Hurricanes hit Houston Bad.
But if you yourself if not your entire family would like
I so understand as I live with many of the same symptoms and have for years., but once you get the right and caring doctor you will be cared for but will
have to have many test as I did to find the right treatment as everyone is different none of us are the same and if you would like a friend i'll be your friend as well just let me know if I can be of any help........

Love yours in Pain Shelly!!!!

What the Drs. name in houston and did you go to a clinic or chiropractor. What kind of tests have you had and what condition do you have. I would appreciate the information.

Rare diseases are RARE and it is most likely you have a combination of problems going on - neurological, infections, and psychological. When you have multiple medical problems it is important that you have a primary care provider that can refer you to specialists that report to her/him to coordinate care. I have a PCP, immunologist, neurologist, urologist, gynecologist, gastrologist, opthalmologist, orthopedic MD, podiatrist, psychiatrist and maybe some I forgot. If you have a PCP organizing your care you may avoid the problems of MDs putting you on meds and another MD telling you to stop taking it.

Of course people on this web site can't diagnose. Many people think that famous doctors at big famous hospitals are best. Choosing doctors that are close to your home can be important so you can most easily get to appointments and stop doctor shopping.

It sounds like you have been diagnosed with migraines. There are several types of migraines with a variety of symptoms. If you have frequent migraines it is important to get on migraine prevention meds like Topamax. It may take a combination of meds before you get relief. I take Topamax, Gabapentin, Depakote, Verapamil, and a generic blood pressure med - all to prevent migraines. Topamax, Gabapentin, and Depakote are also seizure meds. Going to the ER is an ineffective and expensive way to manage migraines. Avoiding things that trigger migraines may decrease how often you have them and how bad they are.

As I understand it, tests like CAT scans and MRIs are to rule out conditions other than migraines and seizures. You can have negative CAT scans and MRI results and have sever migraines.

It is important to rule out seizures. If you have uncontrolled seizures you should NOT drive and it may be illegal to do so. Recently in my city, a young man had a seizure around 7:45 in the morning while driving. His foot pressed the gas reaching about 60 mph on a city street and he caused a massive wreck at a stop light that killed a woman teacher and sent many to the hospital including several children.

The accident was right in front of where my son works. I was taking him to work and went a way I didn't usually go. If we would have left a minute earlier and I drove the usual way, we would have been in the accident. The accident was so bad the street was still closed 8 hours later when I picked my son up. The driver lived with minor injuries and was not charged with any crimes.

Your car syptoms sound like they may be anxiety. Psychotherapy, drugs, or a combination of both may help. Getting a new car may be all you need.

It sounds like you are getting a lot of infections. You may want to have your immunoglobulin levels checked. A urologist should be able to help with the recurring UTIs and bladder pain. Sex can cause infections and antibiotics taken after sex can help. You may need to take antibiotics every day for months or even forever to prevent UTIs. Bladder pain meds cause dry mouth that can be as irritating (or more) as bladder pain. Bladder pain can make it difficult to tell if it's bladder pain or an infection.

You must have a lot of money to be willing to go anywhere in the world! May of us on this website have been wiped out of money and even our homes by our rare diseased. Besides using doctors and hospitals that are a reasonable distance from your home you may be able to afford alternative therapies.


There are people trained to teach relaxation techniques that could help with anxiety and migraines. You could take yoga, pilates, swimming or exercise classes. Acupuncture and chiropractic may help with migraines. Psychotherapy or health counseling could help with everything because of the mind/body connection. A nutritionist could help with general diet, migraines, acid reflux and potassium deficiency. Physical and occupational therapy may be helpful.

Sleep studies can be useful because sleep problems can trigger migraines. If you are waking up and night and think it is because you have to pee it could actually be you aren't sleeping well and when you wake up from sleep problems you attribute it to needing to pee.

A combination of coordinated medical care and alternative therapies that you get locally may be the key to reducing your problems. Some of the symptoms you describe are common. Vomitting blood happens if you vomit enough. Anxiety may have many symptoms and you may even feel like you are dying - but it's (just) anxiety, it won't kill you and you can learn coping techniques. Migraines go away without pain meds. ERs give pain meds because that's what people expect or demand. I don't think migraines can kill you except occular migrains that can cause blindness when you are driving or doing other dangerous activities.

You probably don't have a rare disease, since rare diseases are rare. I'm not a health care provider and can't diagnose. I'm a health educator with common variable immune deficiency (CVID) and other chronic medical problems. I have three children with CVID, allergies, asthma, and migraines. We have been treated by many doctors at many hospitals. I'm way too experienced about choosing doctors and hospitals, illness, ERs, chronic life-threating conditions, medications, therapies.

From you picture it looks like you are a young woman. It's important to get your health under control before you even think about getting pregnant. If you decide to have a baby, choosing your OB is very important. You want to have an OB that specializes in high risk pregnancies even if the OB is an hour away. Avoiding a C-section is important because of your urinary problems and the difficulty of recovering. Choosing a hospital with a NICU is important so the baby isn't transfered to another hospital.

Having a private room is important in getting breastfeeding established and to reduce the chance of getting a hospital related infection. Breastfeeding is extra important for women with medical problems. Almost all meds can be taken while breastfeeding, there are only about 10 you can't take and most of those are recreational drugs.

Many women find their chronic conditions improve or even go away while they are pregnant and breastfeeding and return when the baby weans. Breastfeeding is easier and you have a healthier baby. Breastfeeding is recommended by the World Health Organization for 2 years. Children with medical problems benefit as long as they keep breastfeeding. It may seem like artificial feeding is easier because someone else can do it but it's not. The reality is that moms are alone with their babies most of the time and do most or all of the feeding. Artifically fed babies are sick more often, have worse symptoms, have more doctor visits and hospitalizations.

This is long - I hope it helps. You are not alone, many women suffer from multiple medical problems and are frustrated with doctors and the medical system.

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 348,705 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 87,781 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You