Five Years Ago Today...
 

…was the beginning of the rest of my life. Hard to believe it was that long ago, yet it seems like it was a lifetime ago.

A little history for those who may not know. This is long because it’s a paste from something I’ve posted in the past. Sorry about that.

In June 2002, I was moving from Virginia back to southern Illinois. We didn't have a place to live yet, so we stayed with my in-laws. After two weeks of living there, I began to suffer from headaches. This didn't alarm me at first because I've had headaches all my life and since about 1998, I would have one that would last for about 3-4 days, then go away. It was severe and nothing would touch it, but thankfully it happened every couple months or so.

I had tests from time to time all my life, but nobody has ever explained why I had headaches, as they weren't migraines. I was in a car accident when I was 6, and I wasn't wearing a seatbelt. My mom rear-ended someone and I hit the windshield, cracking it really good with my head. She didn't take me to the hospital, stating to the officer that I was fine. This was the only explanation anyone had for my headache problem.

After my headache in June lasted for more than two weeks, I became concerned. I told my husband that I believed I was becoming toxic to ant spray that my FIL sprayed liberally in his house and that we needed to leave. We went to southern Illinois, two hours from my in-laws house, and stayed in a motel while looking for a house. By the end of the week, I went to the local ER. They gave me a shot of Demerol and Toradol. Nothing happened. They gave me a second dose but still no change.

I went back to my in-laws and went to the ER there the next week. By now, my vision was acting up, my balance was off, and the headaches would not cease. The doctor explained that he thought I was depressed and having anxiety attacks. He said my current lifestyle of living with others and in motels was too much of a strain, and the stress I wasn't able to handle.

I asked him why my vision was acting up and told him I was seeing double, but in a vertical way, not horizontal. He said that stress wouldn't cause that and I should see an eye doc. I left crying and highly upset because I knew that stress wasn't my problem. I've dealt with much worse in my life without having health problems.

Feeling that nobody was going to help me, I believed that I was going insane. Literally going insane. I remember telling myself, "This is what it feels like to lose your mind." I even told my husband that I should probably seek a psychiatrist and submit myself to a mental hospital, or I was going to die.

Two weeks later, I'm back in southern Illinois and decided to see my former doc who did extensive testing after my headaches became more severe in 1998. I should also add that when I went to the ER in 1998, an Xray showed a mass in the front of my brain. CT scans were clear, and I believed that God healed me at that time.

My doc listened to what I was going through and set me up with an eye doc and also a neurologist. She said I had a condition known as Pseudotumor Cerebri. I looked at her funny, thinking she was making this up. She told me she was serious and to look it up online. I did so when I got home and was amazed at what I was reading. I knew exactly what they were talking about! We found a house about this time and moved in.

In late August of 2002, I went to see the eye doc. He did his exam and asked me if I'd seen a neurologist yet. I told him that I was seeing one in three weeks. He started getting excited at this point and told me that I had to see him the very next day because I was about to go blind! My optic nerves were so swollen they were about to burst, and once they did that, I'd be blind for life. This explained why my double vision was vertical and not horizontal.

The neurologist saw me the next day and confirmed the diagnosis that my primary doc mentioned to me. A spinal tap was done and also confirmed what the docs said. I was sent to St. Louis for surgery to implant a shunt in my brain.

I was in Barnes-Jewish hospital for a week. During that week, I had another spinal tap done and other neurological testing. The chief neurologist told me that my docs didn't know what they were talking about or doing in regard to my testing, but there was nothing wrong with me. At best, I had tension headaches. I was sent home in disbelief.

About two weeks later, my headaches subsided. My neurologist told me that sometimes, relieving fluid out of the spine would 'cure' this illness, and I was now feeling the effects. I signed up for college classes to be taken in the spring and get on with my life. I started classed in January and things were going well, but in March, I started feeling the pain coming back. I ignored it and rebuked the devil and felt that this time, it probably was stress causing it.

I took classes in the summer as well, but by the middle of July, my headaches were full blown once again. However, I was getting ready to start the LPN program and was very excited. I hoped to just make it to December and perhaps have surgery then, being able to go back to school in January. I'd read where people recovered from that surgery within two weeks, so I would have plenty of time.

After three weeks of being in school, I had to drop out. I was unable to concentrate due to the neurological problems, which included problems with word finding, speaking the right words in the right order, and understanding the words others said to me. I felt like I would never get better, and since I've never been sick other than the flu twice during my life and an occasional cold, I didn't want to accept that I would need nursing care or die from this illness.

In Sept 2003, I had another spinal tap and was hospitalized (for some reason, I can’t handle the fluid being taken out and had further problems that required nursing care). The hope was to send me again to St. Louis for surgery, but they wouldn’t accept me. Instead, they wanted to see me as an outpatient.

However, as luck would have it, my symptoms started subsiding once again, but it was short-lived. Where I was headache-free for about 6 months before, this time it lasted about six weeks, and by Thanksgiving, the headaches were back. I remember crying late at night thinking that I would be dead by Christmas and when they did the autopsy, and large chunk of tumor would fall out of my brain and they would exclaim, “Well, she was right after all!”

I started seeing a neurologist in St. Louis, since the one I had said he could no longer help me. The new one said he could help me and wanted me to go through yet another battery of tests. This included a spinal tap and I told him I would have to be hospitalized. So in Feb, I was admitted to Washington University Hospital and had a friend with me, since I was unable to drive any longer.

continued below...

Re: Five Years Ago Today...
 

Spinal taps were a horrible experience. I had to be sedated quite a bit without going out, and the pain was tremendous. They often had to use an Xray technique to make sure the needle was going in properly. At this point, I’d had six spinal taps done, but this one was the worst one of all. The pain was so great, I thought he was killing me. I don’t remember a lot, but they were concerned that I was losing touch somehow, and they asked my friend to hold my hand and help me though the procedure. It took about 90 minutes, which was an extreme amount of time, only to learn later that he had medical students doing it. I would never have consented to that had I known ahead of time.

My spinal pressure was now 3-4 times the norm, when before it was about double. I don’t remember much more about that hospital visit except that I left AMA because they refused to give me pain meds that were more potent than Tylenol 3. I was taking Oxycontin and Vicodin at home, so Tyl 3 was like eating M&Ms.

My husband took me to our local hospital, two hours away, and I was admitted there for about a week. I don’t recall much about my hospitalizations because I was constantly given Morphine, Oxycontin, and Phenergan to help with nausea from the pain meds. I was sleeping continuously.

In the meantime, I’d met a woman online who was diagnosed with this same illness who lived near Chicago and had surgery in Jan 2004. She stated that if things didn’t go well in St. Louis, to give him a call and she was sure he would perform the surgery. She didn’t have near the problems I was having.

I was set up with a neurosurgeon in mid Feb. I was excited and so were others who had watched me during this time. The surgeon assessed me, took measurements, rubbed my head, sat back and kicked me in the stomach with this blow….”There is nothing wrong with you.” I said WHAT?? He told me that he was an experienced neurosurgeon and that everyone was wrong about my diagnosis. He said there was no way he would do surgery on me, especially due to the risks involved. I was crying, having had a headache for about 8 months with about a 6 week break.

On the way home, I called my friend in Chicago. She told me to call her surgeon right away, which I did. I would be seeing him at the end of February…the very next week. LadyRev came up to take me and she was present on the surgeon’s office. He listened to my story, looked at my tests and medical records and said something that in itself almost took my pain away…..”First of all, I believe you, and I will help you.”

The surgery was set up for March 12th. I was so excited! Finally, someone was going to help me! I received a call on March 10th asking if I could be there the next morning instead, due to a scheduling conflict. I called LR, who was taking me, and she scrambled to change her plans with work and church. She arrived at my house (at the time, she lived in Memphis, 3 ½ hours from me) at 11:30PM and we left immediately. I had to be at the hospital at 5AM.

We arrived in time and they allowed LR to be with me the entire time until they took me into the surgical suite. She prayed for me and we talked about a lot of things. I gave her a note of things she needed to do in case things didn’t go well. My head would have to be shaved, but since I had very long hair and didn’t want it to go to waste, she put my hair in ponytails and cut each one off. It was a very weird feeling.

I awoke out of surgery feeling that someone had taken a bat to my head. I had two incisions with staples on my head and one stapled incision on my stomach. I don’t remember much about the first day, but the second day, I was amazed at how little pain I felt. I even refused pain meds. I was discharged that second day and went home. LR wasn’t able to stay with me, but even though I still had a good headache, I was feeling so much better that I could take care of myself.

I had a good friend near me who drove me where I needed to go, even picking me up for church. I don’t exactly remember when it happened, but it was within two weeks, I believe, that I woke up one day and realized…..I had no pain. None. It was gone! I signed up for nursing classes once again and was accepted.

I graduated from the LPN program in August 2005, moved to Wisconsin, and graduated from the RN program in May 2008. I’ve not had any problems except once in Nov 2004, but I think it was stress related. No headaches, no problems with the shunt, and my neurosurgeon told me over a year ago that unless I had problems, he didn’t need to see me. I have since moved back to southern Illinois and now work on a critical care unit at a local hospital…one of the nation’s top 100 heart hospitals, in fact.

God is so good to me. Even though He felt it best not to do an absolute miracle in healing me, I felt it was His will for this to happen in my life. I have no lasting effects at all. I had been having memory problems that hindered me a bit, but the other day I realized that my memory was clear and I hadn’t had problems in quite a while. Most people with this illness, even after surgery, the neurological problems weren’t able to be corrected or reversed, so they still suffer with that aspect. God healed me from that happening, and I give Him all the honor and praise for what He’s done in my life.

I feel that I now have a gift…something I couldn’t see before. I deal with very sick people, and because of my experiences, I have a greater understanding of the frustration and depression that people go through when they are sick. I can do more than just empathize…..I truly understand! I can and do witness to others the power of God in my life. I’m so undeserving of God’s goodness and love, but I want to thank Him for all he’s done for me and continues to do in my life and that of my children.

Thanks to you all for ‘listening’.

Re: Five Years Ago Today...
 

Choking back tears here. God bless you for sharing HO

Re: Five Years Ago Today...
 

I am so glad you are here H1, God bless you sister girl!!!!

Re: Five Years Ago Today...
 

HO,

Thanks for sharing your experience. This may really help someone who is struggling with medical issues they can't get diagnosed or resolved.

Re: Five Years Ago Today...
 

Wow. So glad you're better now, HO!

Re: Five Years Ago Today...
 

Wonderful testimony, HO, of God's grace in your life! He works all things together for our good and His glory, even those things we don't like. :)

Re: Five Years Ago Today...
 

Thank You HO - for sharing this. May God continue to bless you and others through your testimony.

Re: Five Years Ago Today...
 

Great testimony, HO! I don't see how you made it through! I can't stand very much pain at all! :sad

God bless!!!!!! Thanks for sharing!!

Re: Five Years Ago Today...
 

God is good!
I am glad you are better!

Re: Five Years Ago Today...
 

A great read! A great God!!!

Re: Five Years Ago Today...
 

H1, I am just sitting here in awe. Not at you, my friend. Altho you're pretty awesome yourself. But at GOD. Isn't He wonderful!!

Thanks for sharing your testimony. What an encouragment. :)

Re: Five Years Ago Today...
 

God is good. Thanks for sharing.

Re: Five Years Ago Today...
 

H1

Thank you so much for sharing this! I have dealt with frequent, chronic headaches for a long time. They are similar to migraine, but other than throwing increasingly stronger analgesics at me that render me completely useless and unable to function, it's hard to get anyone to listen to me and help me. The common thread seems to be CT scans don't show any abnormality. And people (friends) just don't understand. What's the big deal, right? It's "just a headache!"

This gives me such hope! I will continue to push the issue with my doctors, still praying all the while that God would somehow see fit to deliver me from it rather than carry me through it.

Would you be willing to divulge what exactly was your diagnosis? You can PM me if you would rather. I've not had the vertical double vision, but the pain that would last for days/weeks is something I am familiar with.

God bless!

Re: Five Years Ago Today...
 

H1- Thanks for sharing- God is Good all the time!

Re: Five Years Ago Today...
 

Re: Five Years Ago Today...
 

Thanks to everyone for the comments. You are wonderful friends. I'm blessed.

Jim, my condition has a few names. The two main ones are Pseudotumor Cerebri and Intracranial Hypertension. It's more common in women but men can have it too.

There aren't really any definitive tests except by process of elimination, but having a spinal tap after everything else is negative will solidify a diagnosis, as the spinal pressure would be elevated but the fluid must be clear.

Keep me posted. I hope this isn't what you have, but at the same time, it's nice to know what is going on. I didn't know for years.

Re: Five Years Ago Today...
 

I am so touched...thank you for sharing.

Re: Five Years Ago Today...
 

While I can relate, in general, to some of the symptoms you've described here, I am not suffering anything close to the severity of what you have described. I was relating more to the arrogance of doctors and their "nothing wrong with you" diagnoses. It offends me that I can be in such pain and another human can look at me, and can SEE that I'm obviously in pain, and tell me I've basically imagined it all. I'm not crazy, and I'm not a hypocondriac (sp?), and I'm not looking for special attention. I'm just looking for relief from the pain.

Your story gives me a renewed will to keep fighting and getting second opinions. Thanks for your testimony.

Re: Five Years Ago Today...
 

In my nursing practice (and this is only because of what I went through, as I didn't have the understanding before), it's not my job to judge. The definition of pain is 'whatever the person experiencing pain says it is'. I live by that definition, so if the doc has prescribed pain meds and the patient wants some, they get it. So what if they are drug seeking? It's not like they are going to be there long-term. They are going home when we can no longer do anything for them that they can't do at home.

I have heard complaints from patients feeling that if they complain and want pain meds, nurses will think they are drug seekers. I always assure them that they will never get that feeling or attitude from me, and if they are in pain and need something, I want to know about it. I have yet to come across anyone 'drug seeking'.

I'm sorry that sappy docs make you feel like that and therefore don't seem to want to help you. Don't give up. Good docs are out there.

Re: Five Years Ago Today...
 

Now if it offends you when a doctor displays such arrogance, how does it make you feel when a preacher tells you, or someone you know, that you just need to "pray more"? -No matter what the problem or issue is, physical or mental.
This is the reason that I learned many years ago not to let people see me pray. If I am going through a struggle, they will just assume "ok, he's praying. Struggle over".

Re: Five Years Ago Today...
 

If you could see what I have seen in regards to HO's condition then and now, you would be awstruck by what God has done and continues to do.

HO is one incredible lady that God can and does use for His glory. The enemy has fought and continues to fight but HO is a fighter and just doesn't go down so easy.

I've said it before and I'll say it again...I am so very proud (in a good way) of my best friend, HeavenlyOne.

And I'll be seeing her in a few hours! :thumbsup

Re: Five Years Ago Today...
 

I don't drop in as much as I used to, but just had to log in after seeing this thread. I prayed for you often during those days. I thank God for meeting the need, whether it was an instant miracle, or through the skills of a surgeon. There is a special place in my heart, a bonding if you will, for those of us that started so long ago on this thing we call forums. I will forever count us as friends.

Re: Five Years Ago Today...
 

Matt, the only time you ever saw me was when I was very sick. I tried my best not to let it show and have a good time, in spite of the constant pain I was in. I remember bits and pieces about our meeting, but I wish I had more. I'm glad to call you a friend of mine. We will have to meet again sometime so I can have better memories!

Re: Five Years Ago Today...
 

That is why we put in shunts

Re: Five Years Ago Today...
 

Thank you for that.We all need to know that we are not alone in any instant in our lives and I know that God was with you through it all and you are a walking testimony!! Praise Jesus!!

Re: Five Years Ago Today...
 

Wow, HO! I have heard your story in person, but reading it again is a refresher on what you went through. Doctors are pretty good for saying there is nothing wrong with you.....I think what that means is "I don't know", but it's hard because they are supposed to help you. Sorry for what you went through. I know you are a more compassionate nurse and person because of it!

Re: Five Years Ago Today...
 

I was going to not post this on this thread.....not wanting this to get turned into being about me......but then I thought I should....I know there are others out there who deal with the same thing....

Thanks for posting your story. I think it's great you shared. I didn't want to bring this up on your thread, but I have had a chronic on-going "neck" problem for years.....I have had an MRI and seen doctors only to be told "there is nothing wrong with you". It is not completely debilitating....but, when my neck cracks every once in a while, I spiral down fast....sometimes I have cried for 15 minutes after a neck pop and I get forgetful and can't think straight. This began during the years that I talk about the depression I experienced after a minor car accident. This happened 3 months after the birth of my first baby so I think I had postpartum depression too. I have seen many doctors who all say it is anxiety/depression. BUT!!!! When I go to the chiropractor and get adjusted, voila!! I can think more clearly and most of the depression immediately disappears. But, I think there is always a thread of it that remains with me....and nobody understands it from the outside. No one knows what it is like to have to deal with it and always be told there is nothing wrong with you. The neurologist I saw within the last year said there is nothing wrong with me, it is stress and I need to stop seeing the chiropractor so much!! I told this to my chiropractor who got very angry and she said "I don't tell you not to see the neurologist! He needs to stay in his field!"

Anyway, thanks for your story. I understand how it feels to be told the same thing....even though I am still generally functional. I think that having this depression and being told it was spiritual and that I was just basically spiritually lazy or something was devastating. And with it....the inability to reason kept me where I was. I have told my husband if he sees that my neck has popped and I am acting funny to take me by the face and say "GO to the chiropractor!" because my inability to reason sometimes keep me from going. The reason I never talk about this aspect of my life is that it has never been diagnosed as anything other than "there is nothing wrong wtih you". So, it's embarrassing and stressful to even bring it up. Your story gives hope in many ways....and I hate it when people just say to quit whining. Reality is reality. Sometimes all you need is someone to listen to everything you are dealing with and say "Hey, you really ARE dealing with a lot. No wonder you struggle now and then".

Re: Five Years Ago Today...
 

Thought this was interesting!

Magnesium, another nutrient for which brown rice is a good source, has been shown in studies to be helpful for reducing the severity of asthma, lowering high blood pressure, reducing the frequency of migraine headaches, and reducing the risk of heart attack and stroke. How does magnesium accomplish all this? Magnesium helps regulate nerve and muscle tone by balancing the action of calcium. In many nerve cells, magnesium serves as Nature's own calcium channel blocker, preventing calcium from rushing into the nerve cell and activating the nerve. By blocking calcium's entry, magnesium keeps our nerves (and the blood vessels and muscles they ennervate) relaxed. If our diet provides us with too little magnesium, however, calcium can gain free entry, and nerve cells can become overactivated, sending too many messages and causing excessive contraction. Insufficient magnesium can thus contribute to high blood pressure, muscle spasms (including spasms of the heart muscle or the spasms of the airways symptomatic of asthma), and migraine headaches, as well as muscle cramps, tension, soreness and fatigue.

Re: Five Years Ago Today...
 

Just a minor correction...this thread isn't about me, but about what God did for me. Telling your story is perfectly appropriate! :D

And giving hope is part of what I intended. I can't tell you how many times I felt so hopeless that all I felt was left was to die because living in pain like that the rest of my life wasn't an option.

Have hope, my friend. Hold on to it cause sometimes, that's all we have.

Praying for you every day.

Re: Five Years Ago Today...
 

HO, I just now read your story - amazing! I had heard bits & pieces, but never heard the whole thing. We went through some frustrations a few years back with the doctors telling us that nothing was wrong with our daughter. We pressed them until we finally found someone who could diagnose her correctly. And even after that, there were medications prescribed that were more harmful than helpful. It just made me know that doctors are not infallible! Thank God, today she is fine!

Re: Five Years Ago Today...
 

I have lived through the pain of trying to find out what is wrong with you.

When I was in my early 20's I began to get sick after eating pizza, (a youth food :) ) sausage, and fried foods. At first it was a gradual attack and then later became immediately after I ate.

I even had an attack where I thought I was having a heart attack and was rushed to the hospital.

The doctors kept saying gall bladder even though I was very young to have that problem. Yet each test they ran showed nothing.

Finally, the third test revealed the stones.

I was afraid the doctors were not going to believe how sick I was but they did. It was very discouraging at a young age when you have never been sick before.

Re: Five Years Ago Today...
 

Thanks, HO, for the encouragement and letting me talk too. I deal with this almost daily and just don't talk about it. There are days that I feel good but for example, yesterday I was laying on the couch watching a movie with my husband. I like to lean into him but I find it difficult for fear that my neck is going to pop, but I do it anyway because I need to cuddle too! So, there I was, watching a movie and I moved a little and POP! The downward spiral started immediately, the brain fog began. I jumped up immediately and started moving because once in a while if I can work things just right, I can stave off going to the chiropractor which is $38.00 a pop. After exercising through the rest of the movie and going for a walk, I was able to move in such a way that I poppped and the brain fog went away. So, I am good for now....this may last a month or it may last an hour. I almost always have this issue more with my monthly cycle and hormonal changes. I have never had a doctor take me seriously. I have cried a few times after being told there is nothing wrong with me. I was told "I know it's depression because you should be HAPPY there is nothing wrong with you and instead you are sad!" I have had anti-depressants offered to me. I have never signed up for them I just tell the doctor "Fine, I will just go see the chiropractor" which they laugh at. I found a TENS machine at a garage sale and I use it fairly regularly. I had the best results ever when I saw a chiropractor and did a series of ARP training. (Accelerated Recovery Program). She put it on certain muscles and I didn't have this issue for a number of months. But it cost me $500.00 to do it. So, I use the TENS machine the same way the chiropractor
used the ARP training and it helps....mostly with the possibility of getting back "in" when I go "out". Before using the TENS machine, I rarely had success at this. The TENS machine is only suppoed to be used with a prescription under the care of a physical therapist, but since there is "nothing wrong with me" I use it and get the relief I can.