- DISTRACTION--if the pain is "tolerable" but still enough to make me uncomfortable I have found a few things to distract myself so I am not thinking about the pain. This includes many activities such as reading a book, playing with my kids, watching TV/movie, playing a game, cross-stitching (I am terrible at crochet and knitting, already tried.)
- MEDITATION--I know this sounds corny, but this has actually helped immensely. I highly recommend a book called Full Catastrophe Living that taught me how it works. It has helped many people that live with chronic pain. The book recommends doing it for 45 minutes per day, but this is the real world, I have twins to keep up with, 5 minutes sometimes is enough for me.
- EXERCISE--I have found when I get regular exercise I tend to do better. Sometimes just going for a walk actually makes me feel better. It is hard to go exercise when you feel terrible all the time but you just have to find the motivation to start because it does get better.
- MEDICATION--I am not a person that likes to take medication, I try to use other methods if I can, but I have learned that sometimes it just cannot be avoided. When this first set in, I didn't really understand how pain medicine works, specifically narcotic pain medication. I was paranoid about becoming addicted to it, and only took it once the pain was completely out-of-control. This lead to repeated ER visits because the pain got so bad that I couldn't control it myself and was so dehydrated that I needed IV intervention. To add to the confusion, I also get a regular migraines which do not require strong pain medication and will usually be taken care of by regular Ibuprofen, but left untreated can become much worse. Sometimes it was hard for me to know what medication to take. Over time I have learned how each of the headaches typically feel, and likely what it will respond to. If I am not sure I usually try the Ibuprofen first and if it does not respond at all, then resort to the strong pain medication, but now I don't wait until the pain is 10/10 to do something about it, and I have since kept myself out of the ER. Now I rarely need strong pain medicine, which I am very happy about.
- ICE--so while this does not really treat the pain or eliminate it, sometimes it will take the edge off until the pain lessens.
- WARM BATH--This tends to help relax my muscles if I am having a particularly achy day.
- SLEEP--This is more preventative. If I don't sleep enough, I definitely have more headaches.
- HYDRATION--Also preventative. It is extremely important for me to maintain adequate hydration, and not let my fluid status shift rapidly.
- STAYING UPRIGHT DURING ACUTE HEADACHES--this seems a little weird but I have learned that I absolutely can't lay down and try to go to sleep if I have a severe headache, this only makes it worse. Yes, there have been nights I am still awake and attempting to sit up at 2 AM because I don't dare go to bed until the headache subsides.
- PILLOWS--I sleep with my head elevated and avoid laying down flat at all costs, especially for extended periods of time. My husband likes to playfully tease me for the 7 pillows I have on my bed, but it is worth it!
- AVOIDING CONSTIPATION--(I apologize in advance if this makes you uncomfortable) Straining to having a bowel movement increases CSF pressure even more, and can lead to other health complications besides.
- AVOIDING HEAVY WEIGHT LIFTING--I try to avoid lifting anything heavier than my children if I can possibly avoid it, and sometimes that is too much.
- TIGER BALM--Sometimes this is helpful if there is a specific place that is in pain, be aware though, it stinks to high heaven!
- LOW TYRAMINE DIET--This does help me to some extent if I can stick to it. I have talked to other people that swear by it.
- PROPHYLACTIC MEDICATIONS--I was on Diamox for over a year but ultimately stopped using it because the side-effects were so severe (I tend to be very sensitive to medications.) I have been fortunate that my condition is now not as severe as it was initially, and I can usually manage it well with my other methods.
Wednesday, November 2, 2011
Things that help me
So, I think for most people with this condition the headaches and daily pain tend to be some of the worst symptoms to deal with. After living with this condition now for several years I have figured out a few things that have helped me manage and cope with this horrid condition better. I hope some of these will be helpful to other people. I am also hoping that this can be a place where other people can share things they have found that help them. These are in no particular order, but I have listed my most commonly used ones at the top.
Monday, December 20, 2010
My Top 10 Favorite Incorrect Diagnosis I was given
1.) Tension headache
2.) Severe migraines
3.) Stress
4.) Sinusitis/adenoiditis
5.) Rebound pain from narcotics
6.) Pretending to be in pain to get out of working/going to school and to obtain pain medicine
7.) Autoimmune conditions
8.) Stress/Tension headache (they really couldn't let this go)
9.) Any illness caused by a virus that can cause headaches (i.e. West Nile, Meningitis)
10.) Something that causes a headache...(a.k.a "I have no idea")
2.) Severe migraines
3.) Stress
4.) Sinusitis/adenoiditis
5.) Rebound pain from narcotics
6.) Pretending to be in pain to get out of working/going to school and to obtain pain medicine
7.) Autoimmune conditions
8.) Stress/Tension headache (they really couldn't let this go)
9.) Any illness caused by a virus that can cause headaches (i.e. West Nile, Meningitis)
10.) Something that causes a headache...(a.k.a "I have no idea")
Thursday, December 16, 2010
My Mystery Diagnosis
This may be particularly interesting/useful for those still searching for a diagnosis:
I had just started my Junior year of college which was the beginning of an elite and intensive dietetics program I had been accepted into a few months prior. It was enrolled in 19.5 credits of all upper division classes and doing internship hours. About I week into the semester I started getting what felt like a Migraine. I basically ignored it as it was commonplace for me, and I thought it was maybe just related to the stress of starting a new semester. On many occasions they would go away on their own with time, so I tried just waiting it out. The next morning it was still there and was becoming more bothersome so I put some ice on my head and took a little Ibuprofen as that would usually take care of it. This time, however, it had no effect. I went through my course of migraine treatments but the headache did not abate. I found it somewhat unusual that I was unable to sleep it off as that had nearly always worked in the past.
After about a week of fighting the headache to no avail it became extremely intense and I could no longer tolerate it. I had had a stubborn migraine once before but this seemed a little different. I found it unusual that none of my usual treatments were helping at all. In fact, when I laid down it seemed to become more intense. I finally went to the urgent care in the hopes that they could give me some stronger pain medicine and get rid of it once and for all. The doctor diagnosed it as "cluster headaches" and gave me a shot of Demerol to hopefully get rid of it. The headache finally started to go away, and I discovered that I was very sensitive to medication as it put it me to sleep until the next afternoon. When I woke up I thought everything was back to normal until about an hour later...the headache was back. At this point I knew something else must be going on as I had never had even my worst of migraines be this unrelenting. I started noticing that I was having pain in my face and sinuses as well as the headache. I had sinus infections in the past that felt somewhat similar and I thought that could be a possibility.
I called my doctor and he gave me a prescription for an antibiotic. I took that for about a week with no improvement in my symptoms, so we determined that was likely not the cause of my problem. The headache still would not go away, and was becoming increasingly intense as time went on. The headaches drained my energy and made me feel very nauseated. I also started to notice some other more subtle symptoms; my eyes became very sensitive to light, my teeth were very sensitive to cold, and there was an intense pressure behind my eyes. As I didn't have a primary care physician in the town (as I was only there for school) I went to the student wellness center to see a doctor there. I explained that the headache had not gone away for two weeks. He did some neurological exams and told me to go straight to the ER, but did not explain why.
The ER doctor examined me and said he felt it was important to do further testing, first being he want to scan my head...to rule out a brain tumor. I thought 'this can't be happening, am I just having a bad dream?' At this point I was terrified, the thought hadn't even crossed my mind before this. My family was hundreds of miles away, and I didn't even have a chance to contact my boyfriend to let him know I was in the ER (he was also going to school at the time.) I laid there in sheer terror for the next 20 minutes until they were ready for the scan. What felt like an eternity later, the doctor returned to discuss the results...no tumor, but also no explanation for the symptoms. I was ecstatic to not have a fatal brain tumor but still felt uneasy because we still didn't know what was wrong, which meant more testing...
The next thing the doctor wanted to do was a lumbar puncture. I didn't really know anything about it other than that it involved sticking a very long needle into my spine which didn't sound pleasant to say the least. I asked him why he wanted to do the procedure and he said he wanted to rule out meningitis. I asked if he truly suspected that I had it and he admittedly said no, but he wanted to make sure. As I didn't believe I had meningitis (since I didn't have a single other symptom other than headache) and he couldn't give me any other justifiable reason for doing it, I refused it...which I would later regret. (Hindsight is always 20/20!) They ran multiple blood tests which revealed nothing out of the ordinary. Since the doctor had ruled out anything he felt was an imminent threat to my life, and they had given me plenty of IV medications to get rid of the headache and nausea (temporarily) he discharged me home with no answers and advised me to follow up with my primary care doctor if it continued.
The headache promptly returned once the medicine wore off and continued to increase in intensity over the next several days until I was in absolute excruciating pain. Nothing even touched the pain except narcotic pain relievers. I hated the way the medicine made me feel, and was terrified of becoming addicted to it (as so many people do) or being labeled as a "drug seeker" so I always waited until the pain became unbearable again before taking more. (For those of you with a medical background you might be thinking right now that I was having rebound pain from the narcotics however that was not the case. It was a potential diagnosis at one point but we proved that very wrong. You will see why as you keep reading.)
Since I didn't really have a primary care doctor I went back to the wellness center. He didn't really know what to tell me, but he reluctantly gave me enough pain medicine to survive until I could get in to see another doctor. I still felt as if a lot of the pain was in my sinuses and decided to check in with the Ears, Nose, and Throat doctor (ENT.)
The first ENT I saw thought I just had uncontrolled migraines and prescribed medication that is sometimes used as migraine prevention. I didn't believe him, but I knew that if I didn't at least try it, he wouldn't try to help me further. I took the medication religiously for the next 2 weeks with absolutely no improvement. I decided that the doctor was not really listening to me and was downplaying my symptoms too much to be of any help so I decided to see another one in the same office.
When he examined me he saw that my tonsils looked infected and my sinuses were inflamed. He ordered a CT of my sinuses which showed that my adenoids were also very inflamed and my sinuses were a mess. He thought that could be a possible cause of my headache and recommended surgery. I was not very happy about the thought of having surgery in the middle of my semester, but he had come up with a reasonable diagnosis and I had to take the chance that it would help. I got scheduled for surgery in the next couple weeks.
While waiting for surgery I tried to keep up with school while having to constantly take pain and nausea medicine that made me feel drowsy and disconnected. Finally the surgery day came and I was anxious to find out if it worked. When I woke up I had a massive asthma attack and could hardly breathe. I couldn't even tell the nurse what was happening because I was still half sedated. I had to wait until it passed which wasn't for several minutes. After that I noticed that I could breathe out of my nose again, but my head was still in some pain. I spent the next week recovering and thought that it had helped but the headache had not gone away! I had to go to the doctor's office twice a week to have my nose cleaned out which took up a lot of my time. We finally realized that the surgery had not been successful and at that point the doctor didn't think he could do anything else for me and recommended that I see a neurologist.
I was becoming increasing more discouraged because it seemed that the headache was never going to disappear. I began to wonder if I was actually dying from some unknown condition, and by the time they figured it out, it would be too late. I wondered what it would be like to die at 20 years old, how my family and boyfriend would feel. There was still so much I wanted to accomplish in my life and I was afraid I would never get the chance.
In the ensuing weeks I become a shell of a person, I didn't even really feel human anymore. Most days I would wake up, eat a bowl of cereal and go back to bed until the medicine wore off and the pain woke me up again. At best I looked like a drug addict, and at worst I looked like my soul had died...in fact in a lot of ways it had. I became very depressed and almost didn't care if I lived anymore because my quality of life was so poor.
There were several times the headache got worse despite the medication and I had to go the ER to get the pain back under control. I made an appointment with a neurologist, but they couldn't see me for several weeks. I desperately tried to keep up with school, but most of the time couldn't make it to class. My roommate was in the same major with me and was nice enough to let me copy her notes from class when I couldn't make it.
Midterms were approaching and I came to the horrific realization that I had 5 tests, 3 quizzes, and 2 presentations due in the same week! It felt like I had been running a marathon and just hit the wall. At this point I could barely get out of bed let alone try to study. I broke down and sobbed uncontrollably for over an hour. I didn't know what I was going to do. I had worked so hard and so long to get into the program just to have this end it. I was angry and felt cheated by life. After sorting through my emotions, I came to a life changing realization; I decided that I was NOT a quitter. If I was going to get kicked out I wanted to go out swinging rather than just forfeit. I gathered up all the determination that I had in me and decided to take it one day at a time. I didn't ace every test and quiz but I managed to pass them all! I hadn't failed, and at that point I knew that I could take anything life threw at me. I had a renewed desire to find my diagnosis and the confidence to keep going in school.
My appointment with the neurologist came and he felt that it was very important to get an MRI of my brain (as they had previously only CT scanned it.) I was reluctant to because I knew how expensive it was and I was barely able to pay for school. My parents and the doctor said that they would cover the cost but insisted that it be done. They had to place an IV for the contrast but my veins had so much scar tissue from all the past IV's and blood draws they were struggling to find a place that would work because they needed a large vein. They attempted 3 times before they were successful. I am claustrophobic and had to try very hard not to jump out of the machine. I left in excruciating pain with blood down both arms. I had already been through a lot by that point but I still felt somewhat traumatized by the experience.
The scans again revealed nothing out of the ordinary but the doctor took a shot in the dark and put me on steroids thinking it was an inflammatory process of some kind. After two days on corticosteroids the headache magically disappeared! This was our first major breakthrough, although it proved to muddy the waters more than anything. I finished my course of steroids thinking whatever the problem was had been treated by the medication...but as soon as I stopped it, the headache returned. The problem was that we knew the steroids worked but we had no idea why.
At this point I started doing my own research. I was not very familiar with steroids before this but I found out that it acted as an anti-inflammatory and an immunosuppresant. They tested me for several auto-immune conditions all of which came back negative. The other blood work didn't show any evidence of inflammation so this was very puzzling. They ran dozens of blood test but still couldn't find any more leads. At this point the neurologist didn't feel he could help me anymore and honestly didn't know who to send me to as we had no more clues. I began to seriously doubt that I would ever get a diagnosis. I had already seen 11 different doctors and all of them were baffled. Since I didn't know where else to go, I went back the the ENT and he at least prescribed enough steroids to get me through the semester. I hated them, but it was the only way I could somewhat function and finish my classes. The steroids wreaked havoc on me, and I gained 25 pounds in one month. I couldn't sleep and I felt irritable all the time. After the semester ended I could no longer handle the effects of the steroids and I decided to stop them, knowing what would happen.
I went home for winter break so I could at least spend possibly my last holiday with my family. About a week before Christmas I woke up in the middle of the night in the most ungodly pain. The only way I can think to describe it is that it felt as if a hand grenade had gone off inside my skull. I was so sick I couldn't hold any medication down and had no choice but to go back to the ER. I laid on the ER bed for two hours silently screaming while I waited for the doctor to come so I could get pain medicine. (Unfortunately for me and a bunch of other people there had been a bus accident shortly before I arrived.) When the doctor finally saw me he was at a loss for any new testing to do, but he did give me the name of a Neurologist that had an office near the hospital and recommended that I follow up with him. I was skeptical that he could help after the last one gave up on me, but I decided to check with him anyway.
I called to make an appointment and they got me in right away after telling them my situation. The doctor spent over an hour just listening to me explain everything that happened and he occasionally asked a question. After all that, I thought he was going to tell me the same thing as all the others had, "I have no idea what is wrong with you," but instead he actually had a possible diagnosis--Pseudotumor Cerebri. "Pseudowhat?! Was there there the word tumor in there?" I thought. He proceeded to explain that it is a very rare neurological condition that causes abnormally high intercranial pressure in the absence of a mass, and he hypothesized that was the cause of my headaches and other unusual symptoms. The condition mimics the symptoms of a brain tumor, which explained a lot. To confirm he wanted to do a spinal tap...I decided not to refuse this one.
A few days later I went for the procedure. They measured the pressure, which was above normal. They then proceeded to draw out extra fluid according the orders of the neurologist. As the fluid drained I felt the headache dissipating. Once the procedure was complete I realized that all of my symptoms (headache, face pain, sensitivity to light, etc.) had vanished. I was shocked and amazed. I shed tears of joy on the way home because I realized we were finally on the right track. My symptoms reappeared a day or two after the procedure but my doctor promptly prescribed Diamox (which acts as a diuretic on spinal fluid) and my unbearable headaches stayed at bay. I asked why the steroids had worked and he explained that it decreases production of spinal fluid, thereby decreasing the CSF pressure. It all finally made sense!
The fact that I actually had a diagnosis was invaluable to my mental and physical health. We were never able to determine why I have the condition, and it will likely never go away completely but now it can be managed and I can have a relatively normal life. I still have to have regular eye exams to make sure I am not losing my vision, and I have my head scanned every couple years to make sure I haven't actually developed a tumor (which is always nerve-racking,) but I am grateful that I know how to deal with it. I was able to complete my schooling, become a registered dietitian, get married (to my then boyfriend,) and keep up with two very active twin boys.
The moral of this (rather long) story is that I realized that I know my body better than anyone. I had several doctors tell me that it was just stress, or it was just severe migraines, but I KNEW that something was not right. I endured 4 months of complete hell (which I have nicknamed "the dark ages") but I did finally get a diagnosis and it changed my life. The most important thing is to find a doctor that will really listen to you and is willing to see things through--I realize that is easier said than done but they do exist (in small numbers.) Don't give up because the next test they do might be the right one! Good luck to all that are still searching for a diagnosis. I hope this has provided some inspiration, and at the very least let you know that you are not alone.
I had just started my Junior year of college which was the beginning of an elite and intensive dietetics program I had been accepted into a few months prior. It was enrolled in 19.5 credits of all upper division classes and doing internship hours. About I week into the semester I started getting what felt like a Migraine. I basically ignored it as it was commonplace for me, and I thought it was maybe just related to the stress of starting a new semester. On many occasions they would go away on their own with time, so I tried just waiting it out. The next morning it was still there and was becoming more bothersome so I put some ice on my head and took a little Ibuprofen as that would usually take care of it. This time, however, it had no effect. I went through my course of migraine treatments but the headache did not abate. I found it somewhat unusual that I was unable to sleep it off as that had nearly always worked in the past.
After about a week of fighting the headache to no avail it became extremely intense and I could no longer tolerate it. I had had a stubborn migraine once before but this seemed a little different. I found it unusual that none of my usual treatments were helping at all. In fact, when I laid down it seemed to become more intense. I finally went to the urgent care in the hopes that they could give me some stronger pain medicine and get rid of it once and for all. The doctor diagnosed it as "cluster headaches" and gave me a shot of Demerol to hopefully get rid of it. The headache finally started to go away, and I discovered that I was very sensitive to medication as it put it me to sleep until the next afternoon. When I woke up I thought everything was back to normal until about an hour later...the headache was back. At this point I knew something else must be going on as I had never had even my worst of migraines be this unrelenting. I started noticing that I was having pain in my face and sinuses as well as the headache. I had sinus infections in the past that felt somewhat similar and I thought that could be a possibility.
I called my doctor and he gave me a prescription for an antibiotic. I took that for about a week with no improvement in my symptoms, so we determined that was likely not the cause of my problem. The headache still would not go away, and was becoming increasingly intense as time went on. The headaches drained my energy and made me feel very nauseated. I also started to notice some other more subtle symptoms; my eyes became very sensitive to light, my teeth were very sensitive to cold, and there was an intense pressure behind my eyes. As I didn't have a primary care physician in the town (as I was only there for school) I went to the student wellness center to see a doctor there. I explained that the headache had not gone away for two weeks. He did some neurological exams and told me to go straight to the ER, but did not explain why.
The ER doctor examined me and said he felt it was important to do further testing, first being he want to scan my head...to rule out a brain tumor. I thought 'this can't be happening, am I just having a bad dream?' At this point I was terrified, the thought hadn't even crossed my mind before this. My family was hundreds of miles away, and I didn't even have a chance to contact my boyfriend to let him know I was in the ER (he was also going to school at the time.) I laid there in sheer terror for the next 20 minutes until they were ready for the scan. What felt like an eternity later, the doctor returned to discuss the results...no tumor, but also no explanation for the symptoms. I was ecstatic to not have a fatal brain tumor but still felt uneasy because we still didn't know what was wrong, which meant more testing...
The next thing the doctor wanted to do was a lumbar puncture. I didn't really know anything about it other than that it involved sticking a very long needle into my spine which didn't sound pleasant to say the least. I asked him why he wanted to do the procedure and he said he wanted to rule out meningitis. I asked if he truly suspected that I had it and he admittedly said no, but he wanted to make sure. As I didn't believe I had meningitis (since I didn't have a single other symptom other than headache) and he couldn't give me any other justifiable reason for doing it, I refused it...which I would later regret. (Hindsight is always 20/20!) They ran multiple blood tests which revealed nothing out of the ordinary. Since the doctor had ruled out anything he felt was an imminent threat to my life, and they had given me plenty of IV medications to get rid of the headache and nausea (temporarily) he discharged me home with no answers and advised me to follow up with my primary care doctor if it continued.
The headache promptly returned once the medicine wore off and continued to increase in intensity over the next several days until I was in absolute excruciating pain. Nothing even touched the pain except narcotic pain relievers. I hated the way the medicine made me feel, and was terrified of becoming addicted to it (as so many people do) or being labeled as a "drug seeker" so I always waited until the pain became unbearable again before taking more. (For those of you with a medical background you might be thinking right now that I was having rebound pain from the narcotics however that was not the case. It was a potential diagnosis at one point but we proved that very wrong. You will see why as you keep reading.)
Since I didn't really have a primary care doctor I went back to the wellness center. He didn't really know what to tell me, but he reluctantly gave me enough pain medicine to survive until I could get in to see another doctor. I still felt as if a lot of the pain was in my sinuses and decided to check in with the Ears, Nose, and Throat doctor (ENT.)
The first ENT I saw thought I just had uncontrolled migraines and prescribed medication that is sometimes used as migraine prevention. I didn't believe him, but I knew that if I didn't at least try it, he wouldn't try to help me further. I took the medication religiously for the next 2 weeks with absolutely no improvement. I decided that the doctor was not really listening to me and was downplaying my symptoms too much to be of any help so I decided to see another one in the same office.
When he examined me he saw that my tonsils looked infected and my sinuses were inflamed. He ordered a CT of my sinuses which showed that my adenoids were also very inflamed and my sinuses were a mess. He thought that could be a possible cause of my headache and recommended surgery. I was not very happy about the thought of having surgery in the middle of my semester, but he had come up with a reasonable diagnosis and I had to take the chance that it would help. I got scheduled for surgery in the next couple weeks.
While waiting for surgery I tried to keep up with school while having to constantly take pain and nausea medicine that made me feel drowsy and disconnected. Finally the surgery day came and I was anxious to find out if it worked. When I woke up I had a massive asthma attack and could hardly breathe. I couldn't even tell the nurse what was happening because I was still half sedated. I had to wait until it passed which wasn't for several minutes. After that I noticed that I could breathe out of my nose again, but my head was still in some pain. I spent the next week recovering and thought that it had helped but the headache had not gone away! I had to go to the doctor's office twice a week to have my nose cleaned out which took up a lot of my time. We finally realized that the surgery had not been successful and at that point the doctor didn't think he could do anything else for me and recommended that I see a neurologist.
I was becoming increasing more discouraged because it seemed that the headache was never going to disappear. I began to wonder if I was actually dying from some unknown condition, and by the time they figured it out, it would be too late. I wondered what it would be like to die at 20 years old, how my family and boyfriend would feel. There was still so much I wanted to accomplish in my life and I was afraid I would never get the chance.
In the ensuing weeks I become a shell of a person, I didn't even really feel human anymore. Most days I would wake up, eat a bowl of cereal and go back to bed until the medicine wore off and the pain woke me up again. At best I looked like a drug addict, and at worst I looked like my soul had died...in fact in a lot of ways it had. I became very depressed and almost didn't care if I lived anymore because my quality of life was so poor.
There were several times the headache got worse despite the medication and I had to go the ER to get the pain back under control. I made an appointment with a neurologist, but they couldn't see me for several weeks. I desperately tried to keep up with school, but most of the time couldn't make it to class. My roommate was in the same major with me and was nice enough to let me copy her notes from class when I couldn't make it.
Midterms were approaching and I came to the horrific realization that I had 5 tests, 3 quizzes, and 2 presentations due in the same week! It felt like I had been running a marathon and just hit the wall. At this point I could barely get out of bed let alone try to study. I broke down and sobbed uncontrollably for over an hour. I didn't know what I was going to do. I had worked so hard and so long to get into the program just to have this end it. I was angry and felt cheated by life. After sorting through my emotions, I came to a life changing realization; I decided that I was NOT a quitter. If I was going to get kicked out I wanted to go out swinging rather than just forfeit. I gathered up all the determination that I had in me and decided to take it one day at a time. I didn't ace every test and quiz but I managed to pass them all! I hadn't failed, and at that point I knew that I could take anything life threw at me. I had a renewed desire to find my diagnosis and the confidence to keep going in school.
My appointment with the neurologist came and he felt that it was very important to get an MRI of my brain (as they had previously only CT scanned it.) I was reluctant to because I knew how expensive it was and I was barely able to pay for school. My parents and the doctor said that they would cover the cost but insisted that it be done. They had to place an IV for the contrast but my veins had so much scar tissue from all the past IV's and blood draws they were struggling to find a place that would work because they needed a large vein. They attempted 3 times before they were successful. I am claustrophobic and had to try very hard not to jump out of the machine. I left in excruciating pain with blood down both arms. I had already been through a lot by that point but I still felt somewhat traumatized by the experience.
The scans again revealed nothing out of the ordinary but the doctor took a shot in the dark and put me on steroids thinking it was an inflammatory process of some kind. After two days on corticosteroids the headache magically disappeared! This was our first major breakthrough, although it proved to muddy the waters more than anything. I finished my course of steroids thinking whatever the problem was had been treated by the medication...but as soon as I stopped it, the headache returned. The problem was that we knew the steroids worked but we had no idea why.
At this point I started doing my own research. I was not very familiar with steroids before this but I found out that it acted as an anti-inflammatory and an immunosuppresant. They tested me for several auto-immune conditions all of which came back negative. The other blood work didn't show any evidence of inflammation so this was very puzzling. They ran dozens of blood test but still couldn't find any more leads. At this point the neurologist didn't feel he could help me anymore and honestly didn't know who to send me to as we had no more clues. I began to seriously doubt that I would ever get a diagnosis. I had already seen 11 different doctors and all of them were baffled. Since I didn't know where else to go, I went back the the ENT and he at least prescribed enough steroids to get me through the semester. I hated them, but it was the only way I could somewhat function and finish my classes. The steroids wreaked havoc on me, and I gained 25 pounds in one month. I couldn't sleep and I felt irritable all the time. After the semester ended I could no longer handle the effects of the steroids and I decided to stop them, knowing what would happen.
I went home for winter break so I could at least spend possibly my last holiday with my family. About a week before Christmas I woke up in the middle of the night in the most ungodly pain. The only way I can think to describe it is that it felt as if a hand grenade had gone off inside my skull. I was so sick I couldn't hold any medication down and had no choice but to go back to the ER. I laid on the ER bed for two hours silently screaming while I waited for the doctor to come so I could get pain medicine. (Unfortunately for me and a bunch of other people there had been a bus accident shortly before I arrived.) When the doctor finally saw me he was at a loss for any new testing to do, but he did give me the name of a Neurologist that had an office near the hospital and recommended that I follow up with him. I was skeptical that he could help after the last one gave up on me, but I decided to check with him anyway.
I called to make an appointment and they got me in right away after telling them my situation. The doctor spent over an hour just listening to me explain everything that happened and he occasionally asked a question. After all that, I thought he was going to tell me the same thing as all the others had, "I have no idea what is wrong with you," but instead he actually had a possible diagnosis--Pseudotumor Cerebri. "Pseudowhat?! Was there there the word tumor in there?" I thought. He proceeded to explain that it is a very rare neurological condition that causes abnormally high intercranial pressure in the absence of a mass, and he hypothesized that was the cause of my headaches and other unusual symptoms. The condition mimics the symptoms of a brain tumor, which explained a lot. To confirm he wanted to do a spinal tap...I decided not to refuse this one.
A few days later I went for the procedure. They measured the pressure, which was above normal. They then proceeded to draw out extra fluid according the orders of the neurologist. As the fluid drained I felt the headache dissipating. Once the procedure was complete I realized that all of my symptoms (headache, face pain, sensitivity to light, etc.) had vanished. I was shocked and amazed. I shed tears of joy on the way home because I realized we were finally on the right track. My symptoms reappeared a day or two after the procedure but my doctor promptly prescribed Diamox (which acts as a diuretic on spinal fluid) and my unbearable headaches stayed at bay. I asked why the steroids had worked and he explained that it decreases production of spinal fluid, thereby decreasing the CSF pressure. It all finally made sense!
The fact that I actually had a diagnosis was invaluable to my mental and physical health. We were never able to determine why I have the condition, and it will likely never go away completely but now it can be managed and I can have a relatively normal life. I still have to have regular eye exams to make sure I am not losing my vision, and I have my head scanned every couple years to make sure I haven't actually developed a tumor (which is always nerve-racking,) but I am grateful that I know how to deal with it. I was able to complete my schooling, become a registered dietitian, get married (to my then boyfriend,) and keep up with two very active twin boys.
The moral of this (rather long) story is that I realized that I know my body better than anyone. I had several doctors tell me that it was just stress, or it was just severe migraines, but I KNEW that something was not right. I endured 4 months of complete hell (which I have nicknamed "the dark ages") but I did finally get a diagnosis and it changed my life. The most important thing is to find a doctor that will really listen to you and is willing to see things through--I realize that is easier said than done but they do exist (in small numbers.) Don't give up because the next test they do might be the right one! Good luck to all that are still searching for a diagnosis. I hope this has provided some inspiration, and at the very least let you know that you are not alone.
Wednesday, December 15, 2010
Support for People with Pseudotumor Cerebri and Other Rare Disorders
My name is Ginger. I have been living with Pseudotumor Cerebri (PTC) for about 5 years now. I decided to start this blog for the purpose of giving hope and support to other people with this condition, and even others that are struggling to find a diagnosis for an uncommon disorder. I am also hoping to raise awareness for PTC as it is not well known (even amongst the medical profession as I have discovered.)
I have a wonderful family that are supportive and love me very much, however I have found over time, that the only people than can truly understand what I have experienced and what I am currently living through is other people with the condition. Sometimes it is just nice to know that someone else knows EXACTLY how you feel. Since we seem to be few and far between, I hope this will become a place to connect, share, and possibly even heal. I hope all who read this find it inspiring on some level.
I have a wonderful family that are supportive and love me very much, however I have found over time, that the only people than can truly understand what I have experienced and what I am currently living through is other people with the condition. Sometimes it is just nice to know that someone else knows EXACTLY how you feel. Since we seem to be few and far between, I hope this will become a place to connect, share, and possibly even heal. I hope all who read this find it inspiring on some level.
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