You don't always have to take medication to help with your chronic headaches, although if you've found something that works for you who am I to tell you to stop. I would have to say that biofeedback has helped me the most. As weird as it sounds they taught me to breathe, yes, breathe...the right way, through your diaphragm (most people don't even realize that they aren't breathing the right way). I learned that when you breathe in your body tenses up but when you breathe out your body relaxes itself. Its almost a type of meditation, once you can quiet your mind by focusing on regulating your breathing pattern, you'll find out that your body naturally relaxes. Thus, causing your tension headaches to ease up. If unfortunately you can't seem to find a good biofeedback therapist, there are other things out there that did cause some relief for me. A tens unit at one point caused major relief for my tension headaches, (until I got botox, then...it wasn't so helpful!). Getting a nice massage is ALWAYS helpful. If a tens unit and a massage are out of your budget, I've found that even taking a hot shower can help, or a whirlpool.
Other things I have found out, is that when you're low on vitamins (Iron, magesium or most likely vitamin D) that it can cause a big problem with your migraines or headaches. Just be aware of your body. Things as simple as not getting enough sleep, water or food can cause havoc on your headaches. I often find that having fun and forgetting your problems can have a positive effect. And lastly I wanted to share a strange thing that I've noticed about my headaches. I have two tattoos, and both times when I went and got them done I noticed that my headaches seemed to get better for about three days afterwards. It could be something to do with all the nerve endings or simply because it seems to relax me, either way it helps.
Wednesday, March 20, 2013
Tuesday, March 12, 2013
Words of advice
After I share my story with people, one of the first questions I get is "How do you do it, how do you mentally deal with it all?". The truth is, I couldn't tell you exactly how I do it. I can however tell you that I don't focus on it, I focus on what I need to do that day. One day at a time. I've always been the kind of gal that looks at the glass half full. And that's how I look at my life, sure there are things I would love to change (like having to live in the blistering cold of Minnesota) but I've always made the best of my life. We're all dealt a certain hand in life, you could fold and hang your head low or you can bluff with a big grin on your face. It's all about your outlook and your attitude. My best advice I would have for those of you that are struggling dealing with the constant pain would be, remember life IS worth living. I know it's a hard thing to do, but find a way to bring joy and laughter into your life. Whether it's watching family guy, the dudesons or just plan old makin jokes. And NEVER forget you're not alone. (I'm always here for you!). Trust me, I know it's tough to keep a positive attitude and outlook but that is going to be the only way to make it. Yes, you can make it, and if you fall, someone will be there to catch you. Keep your head up, it can only go up from here.
Tuesday, March 5, 2013
Long story short
In case you don't feel like reading the four and a half life story below, I would be more than happy to squeeze and reshape It Into a fun size for you.
I started my struggle with chronic migraines in 07', after my first sinus surgery. The first neurologist I saw was a joke, I got a second opinion In April of 08'. After trying a few different medications with no success and a doctor with no more ideas I moved on to the adult unit In the middle of 2009. Found a new medication that worked well with my chronic daily headaches. Had my second sinus surgery In December of 09'. Was doing good up until my car accident on April 1st 2010. Started having heart troubles that summer. Changed neurologists In October of 2010, tried more medications and ended up having bad reactions to all of them. Started botox In 2010. Spend most of my summer's (2011 and 2012) In the emergency room. Was finally diagnosed with P.O.T.S. In August of 2012.
As of today, I am still dealing with my chronic migraines/ daily headaches as well as my P.O.T.S.
I started my struggle with chronic migraines in 07', after my first sinus surgery. The first neurologist I saw was a joke, I got a second opinion In April of 08'. After trying a few different medications with no success and a doctor with no more ideas I moved on to the adult unit In the middle of 2009. Found a new medication that worked well with my chronic daily headaches. Had my second sinus surgery In December of 09'. Was doing good up until my car accident on April 1st 2010. Started having heart troubles that summer. Changed neurologists In October of 2010, tried more medications and ended up having bad reactions to all of them. Started botox In 2010. Spend most of my summer's (2011 and 2012) In the emergency room. Was finally diagnosed with P.O.T.S. In August of 2012.
As of today, I am still dealing with my chronic migraines/ daily headaches as well as my P.O.T.S.
Sunday, March 3, 2013
Bet you're wondering how it all started huh?
We must go back into time, back to when the dinosaurs roamed the earth...wait no, that's too far! Let's just start in 07'. After having multiple sinus infections, my ENT decided it would be best to do a routine surgery. And that's when my love affair with migraines all started. About a month after the surgery, I started to notice something different...this weird pain around my head something I've never experienced in my life. It just so happened I was scheduled to see my doctor that day, I brought it up to her and she said "Oh, it's quite normal after all the trauma to the face but if it continues you would want to see your primary". I thought nothing of it, (you're typical fourteen year old). It took me until mid-November to realize it wasn't normal, something was wrong. It wasn't just an occasional headache, it was the most intense pain that I had ever felt in my head, and it was constant, every day, seven days a week! I went and saw my primary, who sent me to a neurologist. And wouldn't you know, I ended up getting the dude who and I quote "What you need to do is go to school and deal with it! You can't be missing school!" Wow! Really? No tests, scans, meds, the only thing he did was send me to a physical therapist. Who might I add, was a little...odd...Although P.T. helped a little bit with the tension in my shoulders, I was still having these horrible daily headaches, which were getting worse. So my mom and I talked it over, and we both agreed that I should get a second opinion.
The second doctor I saw, seemed more willing to help me, which was a relief to me. He ordered up a few tests and decided to try me on a medication. He also suggested I try an infusion to try and break the cycle. The infusion helped about three days then my pain started creeping back until I had my full-blown chronic headache/ migraine. And as far as the new med, after two months I had no difference. After the first med failed, he switched me onto another, and another, and one more...no change. (With infusions every four months or so). There got to a point when I felt that he just wasn't as into helping me, after trying four medications and not having any improvement, I felt like a lost cause. I clearly remember the last day I walked into his office, crying. As he came into the room I looked at him with tears clouding up my vision, I asked him, "What now?" He looked at me and in a very defeated voice answered, "I think it would be best if you went to the adult clinic, I don't know what else to do". I couldn't help but feel defeated myself, but yet I still held onto that little bit of hope. I said to myself, "Yes it's been almost a year with no change, but maybe it's a good thing I'm going to the adult clinic, maybe they will have a better idea of how to treat me!"
After having to wait two and a half weeks to get into the adult unit, I finally got an appointment with a female doctor. Once again, I noticed how enthusiastic this new doctor was about helping me. She ordered up some more tests, and again tried me on some medications, and also suggested a biofeedback specialist. I was making good progress with the biofeedback people. I even looked forward to seeing them! The lady who had the joy of working with me, taught me a lot. How to calm my body, and quiet my mind (something I still use to this day). I continued seeing her for a total of six months or so, until the clinic closed. I think I tried about three meds before I was put on one that actually helped. I was attending school but still missing most days because of the migraines. (I had tried my fair share of different rescue meds but nothing helped). In two thousand and nine, I was back at my ENT's office with more sinus troubles. I actually ended up seeing a new doctor due to the fact that my old doc being on vacation. Without hesitation, he suggested another surgery. Oh great! (Yea, that's what I said!) So in the bitter cold of winter of 09' i had my second surgery. Unlike the first surgery, I for once didn't have any complications. And I noticed a hugh improvement! I was doing pretty good, with this med, my new nose, P.T. and the occasional steroid pack, I was able to get out more which was a plus in my book! I was planning on going back to school full time after spring break...until I was in a car accident.
It was four twenty eight in the afternoon, on a beautiful spring day. Birds were singing, bunnies were skipping, and kiddies were giggling. We were on a mini road trip waiting at a red light, enjoying the scenery, when all of a sudden BAM!! It took me about seven minutes to even understand what the heck was going on. My sister and mother were talking in very panicked voices, although I didn't understand what they were saying, all I keep hearing was "OH MY GOSH!" "SHE JUST HIT US, WHAT THE H***!!" "WHAT ON EARTH WAS SHE DOING?". I honestly don't remember much of that day, all I can tell you is we all ended up going to the emergency room that night. The ER doctor did a cat scan on my brain because of the symptoms I was having. It came back normal, but because I was puking, had some memory loss, a pounding headache, and a lump on my head, they figured I had a concussion. I started a P.T. program specializing with motor vehicle accident victims. Over the next few weeks, I noticed that the dizziness, the confusion, the memory loss, the nausea and let's not forget the worst headaches/ migraines I had ever received, hadn't gone away or loosened up they were actually getting terribly worse, even being on the medication that had helped me for the last year. I had an appointment with my neurologist scheduled (it was three weeks post car accident). I explained to her what had happened, she was actually angry, which surprised me. At the end of the appointment she looks at me and says "Well, I don't know what to do about the headaches, or the dizziness, but you can make an appointment with me in about five months". Five months? Seriously?? I honestly didn't know what to think, let alone do. This was my third doctor! After two months, I decided I needed to have a talk with my primary. First, she sent me to the concussion clinic to see where I was with the healing process of my brain. I went there, they did all kinds of different computer tests, which I all failed...miserably. After having had multiple trips to the ER because of the dizziness and feeling like I was going to faint every time I'd get up, plus the results of the concussion pros, my primary suggested I should try to get in with doctors in Rochester. Of course I was willing to get to the bottom of these issues! I agreed but had to wait and see if they would accept me into their program.
While waiting to hear back from the team in Rochester, I started noticing funny things with my heart. Whenever I would stand longer then five minutes it would start to flip and flop and jump around in my chest. At first I thought, "Oh well, it's probably normal when your dizzy and faint-y all the time". It wasn't normal, so again I made a field trip to my primary who sent me to a cardiologist. I played the waiting game once again...finally I got in a few weeks later. Wouldn't cha know, the doctor looks at me and says "I highly doubt you have anything wrong, just a little anxiety, but I guess I can give you a monitor just to make sure". I wore that heart monitor for a full twenty four hours, I was smelly and oily but hopeful that this would solve the heart problem. It didn't, I got a call back two days later from the nurse "We didn't see anything on your monitor, If you have any more problems feel free to come back and see us". I couldn't believe it. I could not tell you how many times I was let down by these doctors. I remember lying awake in bed at night praying that something would just show up on one of these tests, even if it was something bad. I know that sounds like a horrible thing to pray for, but what was I supposed to pray for? The doctors treated me as if I was a nutcase. So many people had thought that about me (only when the first things they tried didn't work), I started to think I was nuts!
Luckily two months later, I finally received the phone call I had been drooling over. I was accepted into the program in Rochester! I shoved down the excitement and the happy feelings in order to protect myself, so I wouldn't get disappointed again. Although I could feel in my bones, that this was my answer. My appointment was originally supposed to be four months out, good old mom called and told the nurses that I couldn't wait, I was not doing so hot. I was put on a cancelation list, and as fate would have it, managed to get in with the head doctor of the children's neurology unit. I got in after my sixteenth birthday in two thousand ten. I was called back to see the doctor after our two hour drive, he got into the room and started asking me some questions. And I just started bawling, like a big-ol baby. I'm sure he thought I was indeed nuts. He ordered some tests and...for me to see a psychologist. (Just so everyone knows, I am not crazy, yet). In fact, they couldn't find any mental health problems wrong with (Just to make sure, I ended up seeing three of them). Once it was justified that I didn't belong in a locked ward. I was put on more medications for the headaches/ migraines. I was put back on the med that originally worked, but on a higher dosage. It helped but after three to four months, I noticed that this burning feeling across my skull started to appear. I was quickly taken off that med and put on another. After trying different medications all with bad side effects and no change, I was stuck a hole again. (I did however find a rescue medication for my migraines). And again in the summer of two thousand eleven, I was back in the emergency rooms for my heart, like clockwork. Back to see the cardiologist...this time they put me on an event monitor. I would have it for a month and record my heart when I felt it was acting up. Well a month went by, sent in the monitor, received a call back telling me "Yea, we didn't see anything on the monitor". I started to feel like I was in a really bad lifetime movie...before I had received that phone call I had been in to see my primary, this time for hair loss. Being a young female with long flowing golden hair, you could imagine the freak outs I would have when my hair would come out in globs. She did a blood test, and called me within a week. It came back that something indeed was wrong! "I told ya so!" I remember yelling at the message box. My iron levels were extremely low, so low that they wanted me back in two weeks to get re-tested. And to see if I was building, if I wasn't they were going to have to do something different, (I assumed blood transfusions). I did luck out and built but I would have to be on iron for months.
While I was building, I noticed how wonderful I felt! For the first time in over a year, I felt like a human and not like a zombie on automatic pilot. I think it was somewhat good news for my neurologist as well, "When your iron levels are low it can make you feel funny, and cause headaches". Finally! It wasn't all in my head, I had a legit problem. I continued to try a few more medications, no dice. My neurologist suggested I try botox injections. In January of two thousand eleven, I tried my first session of botox. After the first dose, I didn't notice too much improvement, until it came time to go back (three months later). Then I did notice a difference. It helped with my daily headaches! Every time I would go back it helped more and more and more! Not only did it help with the chronic daily headaches but also with the migraines. It was amazing! I could actually start school again. Live my life somewhat normally, except for that lingering heart issue. In the summer of two thousand twelve, I was back to my normal routine of the trips to ER. There was one trip were I was so dizzy, lightheaded, and feeling like I was going to pass out, that I didn't know if I could make it. I was severly dehydrated. Ever since that bad dehydration, my dizziness and heart palpitations (and a laundry list of other symptoms), went downhill. I had it all the time, I would go to bed with it and wake up with it. For the third year in a row, I called my cardiologist they didn't get back to me until I called them back three days later, to tell me I was too old to be seen there. But in the meantime, I had made an appointment with (yup, you guessed it) my primary. Who after much review of my medical chart, (which I'm sure is seventeen inches thick by now) had me do a laying down, sitting up, and standing up test with her. And finally caught something! My blood pressure was normal for all three positions, but my heart rate would go haywire when I would sit up or stand up. She documented it, and sent me on my way with another referral. I got in the car with my mom, and called the "adult" heart clinic. After explaining to the nurse on the other line what was going on, she says, "Can you get here by two?".
It was one thirty eight. I replied "I surely can try". Before I knew it I was at the cardiologist's office. She repeated the lying, sitting, and standing test, same results. And before I could even get out my whole story, the doctor looks at me and to my relief says, "I think I know exactly what's wrong with you." "Have you ever heard of P.O.T.S.?". I looked at her dumbfounded and managed to squeeze out "No". She said, "I want you to see the specialist in P.O.T.S. just to make sure it is what I think it is". She gave me some tips and numbers if anything were to happen, because it was a wait to get into this specific doctor. In early August, of two thousand twelve I was scheduled to meet with this P.O.T.S. pro. He looked at the lying, sitting, and standing tests, and without hesitation ordered two blood tests (one easy, one complicated), an EKG, and also an echocardiogram. He then explained to me what P.O.T.S. was, (there are two types of it) gives me some more pointers to get me through until we were to meet again. That night after all the tests, I could feel in my gut, that this time, one of my tests were going to come back abnormal. But it could have just been my indigestion. I went back a few weeks later to hear the results and hopefully get a treatment plan going. The gods must have been listening to me, (which was nice for a change, because I was beginning to think they just tuned me out) because one of the tests did come back abnormal. It turned out I have the types of P.O.T.S. that is low blood volume/ low plasma levels. As I sit here typing this, to this very day, it gives me shivers. Words could not even began to explain how ecstatic I was, what a relief it was. I was put on iron tablets (the same one I was on before) along with a salt tablet, to try to build blood, and keep in water to increase blood mass. In October, I was back at my neurologist's office for a checkup. He seemed a little surprised, because one of the tests he had ordered up (a tilt table test) should have detected it. He and I both agreed to stick with the botox, and continue with the P.O.T.S. treatment (because the P.O.T.S. can very well cause the daily headaches). And see how things are in a year.
As your probably aware, it is March 3rd, 2013, and to this very day I still continue my daily battles with both the chronic headaches/ chronic migraines as well as my P.O.T.S. I'm not going to say it's been an easy road but I can say I am extremely overjoyed to be sitting here sharing my story with you. I don't know what tomorrow has in store for me, but I can only see wonderful things headed my way. (P.S. this isn't the full story, because that would take thirty pages and alot of tuna, for me to remember it all).
The second doctor I saw, seemed more willing to help me, which was a relief to me. He ordered up a few tests and decided to try me on a medication. He also suggested I try an infusion to try and break the cycle. The infusion helped about three days then my pain started creeping back until I had my full-blown chronic headache/ migraine. And as far as the new med, after two months I had no difference. After the first med failed, he switched me onto another, and another, and one more...no change. (With infusions every four months or so). There got to a point when I felt that he just wasn't as into helping me, after trying four medications and not having any improvement, I felt like a lost cause. I clearly remember the last day I walked into his office, crying. As he came into the room I looked at him with tears clouding up my vision, I asked him, "What now?" He looked at me and in a very defeated voice answered, "I think it would be best if you went to the adult clinic, I don't know what else to do". I couldn't help but feel defeated myself, but yet I still held onto that little bit of hope. I said to myself, "Yes it's been almost a year with no change, but maybe it's a good thing I'm going to the adult clinic, maybe they will have a better idea of how to treat me!"
After having to wait two and a half weeks to get into the adult unit, I finally got an appointment with a female doctor. Once again, I noticed how enthusiastic this new doctor was about helping me. She ordered up some more tests, and again tried me on some medications, and also suggested a biofeedback specialist. I was making good progress with the biofeedback people. I even looked forward to seeing them! The lady who had the joy of working with me, taught me a lot. How to calm my body, and quiet my mind (something I still use to this day). I continued seeing her for a total of six months or so, until the clinic closed. I think I tried about three meds before I was put on one that actually helped. I was attending school but still missing most days because of the migraines. (I had tried my fair share of different rescue meds but nothing helped). In two thousand and nine, I was back at my ENT's office with more sinus troubles. I actually ended up seeing a new doctor due to the fact that my old doc being on vacation. Without hesitation, he suggested another surgery. Oh great! (Yea, that's what I said!) So in the bitter cold of winter of 09' i had my second surgery. Unlike the first surgery, I for once didn't have any complications. And I noticed a hugh improvement! I was doing pretty good, with this med, my new nose, P.T. and the occasional steroid pack, I was able to get out more which was a plus in my book! I was planning on going back to school full time after spring break...until I was in a car accident.
It was four twenty eight in the afternoon, on a beautiful spring day. Birds were singing, bunnies were skipping, and kiddies were giggling. We were on a mini road trip waiting at a red light, enjoying the scenery, when all of a sudden BAM!! It took me about seven minutes to even understand what the heck was going on. My sister and mother were talking in very panicked voices, although I didn't understand what they were saying, all I keep hearing was "OH MY GOSH!" "SHE JUST HIT US, WHAT THE H***!!" "WHAT ON EARTH WAS SHE DOING?". I honestly don't remember much of that day, all I can tell you is we all ended up going to the emergency room that night. The ER doctor did a cat scan on my brain because of the symptoms I was having. It came back normal, but because I was puking, had some memory loss, a pounding headache, and a lump on my head, they figured I had a concussion. I started a P.T. program specializing with motor vehicle accident victims. Over the next few weeks, I noticed that the dizziness, the confusion, the memory loss, the nausea and let's not forget the worst headaches/ migraines I had ever received, hadn't gone away or loosened up they were actually getting terribly worse, even being on the medication that had helped me for the last year. I had an appointment with my neurologist scheduled (it was three weeks post car accident). I explained to her what had happened, she was actually angry, which surprised me. At the end of the appointment she looks at me and says "Well, I don't know what to do about the headaches, or the dizziness, but you can make an appointment with me in about five months". Five months? Seriously?? I honestly didn't know what to think, let alone do. This was my third doctor! After two months, I decided I needed to have a talk with my primary. First, she sent me to the concussion clinic to see where I was with the healing process of my brain. I went there, they did all kinds of different computer tests, which I all failed...miserably. After having had multiple trips to the ER because of the dizziness and feeling like I was going to faint every time I'd get up, plus the results of the concussion pros, my primary suggested I should try to get in with doctors in Rochester. Of course I was willing to get to the bottom of these issues! I agreed but had to wait and see if they would accept me into their program.
While waiting to hear back from the team in Rochester, I started noticing funny things with my heart. Whenever I would stand longer then five minutes it would start to flip and flop and jump around in my chest. At first I thought, "Oh well, it's probably normal when your dizzy and faint-y all the time". It wasn't normal, so again I made a field trip to my primary who sent me to a cardiologist. I played the waiting game once again...finally I got in a few weeks later. Wouldn't cha know, the doctor looks at me and says "I highly doubt you have anything wrong, just a little anxiety, but I guess I can give you a monitor just to make sure". I wore that heart monitor for a full twenty four hours, I was smelly and oily but hopeful that this would solve the heart problem. It didn't, I got a call back two days later from the nurse "We didn't see anything on your monitor, If you have any more problems feel free to come back and see us". I couldn't believe it. I could not tell you how many times I was let down by these doctors. I remember lying awake in bed at night praying that something would just show up on one of these tests, even if it was something bad. I know that sounds like a horrible thing to pray for, but what was I supposed to pray for? The doctors treated me as if I was a nutcase. So many people had thought that about me (only when the first things they tried didn't work), I started to think I was nuts!
Luckily two months later, I finally received the phone call I had been drooling over. I was accepted into the program in Rochester! I shoved down the excitement and the happy feelings in order to protect myself, so I wouldn't get disappointed again. Although I could feel in my bones, that this was my answer. My appointment was originally supposed to be four months out, good old mom called and told the nurses that I couldn't wait, I was not doing so hot. I was put on a cancelation list, and as fate would have it, managed to get in with the head doctor of the children's neurology unit. I got in after my sixteenth birthday in two thousand ten. I was called back to see the doctor after our two hour drive, he got into the room and started asking me some questions. And I just started bawling, like a big-ol baby. I'm sure he thought I was indeed nuts. He ordered some tests and...for me to see a psychologist. (Just so everyone knows, I am not crazy, yet). In fact, they couldn't find any mental health problems wrong with (Just to make sure, I ended up seeing three of them). Once it was justified that I didn't belong in a locked ward. I was put on more medications for the headaches/ migraines. I was put back on the med that originally worked, but on a higher dosage. It helped but after three to four months, I noticed that this burning feeling across my skull started to appear. I was quickly taken off that med and put on another. After trying different medications all with bad side effects and no change, I was stuck a hole again. (I did however find a rescue medication for my migraines). And again in the summer of two thousand eleven, I was back in the emergency rooms for my heart, like clockwork. Back to see the cardiologist...this time they put me on an event monitor. I would have it for a month and record my heart when I felt it was acting up. Well a month went by, sent in the monitor, received a call back telling me "Yea, we didn't see anything on the monitor". I started to feel like I was in a really bad lifetime movie...before I had received that phone call I had been in to see my primary, this time for hair loss. Being a young female with long flowing golden hair, you could imagine the freak outs I would have when my hair would come out in globs. She did a blood test, and called me within a week. It came back that something indeed was wrong! "I told ya so!" I remember yelling at the message box. My iron levels were extremely low, so low that they wanted me back in two weeks to get re-tested. And to see if I was building, if I wasn't they were going to have to do something different, (I assumed blood transfusions). I did luck out and built but I would have to be on iron for months.
While I was building, I noticed how wonderful I felt! For the first time in over a year, I felt like a human and not like a zombie on automatic pilot. I think it was somewhat good news for my neurologist as well, "When your iron levels are low it can make you feel funny, and cause headaches". Finally! It wasn't all in my head, I had a legit problem. I continued to try a few more medications, no dice. My neurologist suggested I try botox injections. In January of two thousand eleven, I tried my first session of botox. After the first dose, I didn't notice too much improvement, until it came time to go back (three months later). Then I did notice a difference. It helped with my daily headaches! Every time I would go back it helped more and more and more! Not only did it help with the chronic daily headaches but also with the migraines. It was amazing! I could actually start school again. Live my life somewhat normally, except for that lingering heart issue. In the summer of two thousand twelve, I was back to my normal routine of the trips to ER. There was one trip were I was so dizzy, lightheaded, and feeling like I was going to pass out, that I didn't know if I could make it. I was severly dehydrated. Ever since that bad dehydration, my dizziness and heart palpitations (and a laundry list of other symptoms), went downhill. I had it all the time, I would go to bed with it and wake up with it. For the third year in a row, I called my cardiologist they didn't get back to me until I called them back three days later, to tell me I was too old to be seen there. But in the meantime, I had made an appointment with (yup, you guessed it) my primary. Who after much review of my medical chart, (which I'm sure is seventeen inches thick by now) had me do a laying down, sitting up, and standing up test with her. And finally caught something! My blood pressure was normal for all three positions, but my heart rate would go haywire when I would sit up or stand up. She documented it, and sent me on my way with another referral. I got in the car with my mom, and called the "adult" heart clinic. After explaining to the nurse on the other line what was going on, she says, "Can you get here by two?".
It was one thirty eight. I replied "I surely can try". Before I knew it I was at the cardiologist's office. She repeated the lying, sitting, and standing test, same results. And before I could even get out my whole story, the doctor looks at me and to my relief says, "I think I know exactly what's wrong with you." "Have you ever heard of P.O.T.S.?". I looked at her dumbfounded and managed to squeeze out "No". She said, "I want you to see the specialist in P.O.T.S. just to make sure it is what I think it is". She gave me some tips and numbers if anything were to happen, because it was a wait to get into this specific doctor. In early August, of two thousand twelve I was scheduled to meet with this P.O.T.S. pro. He looked at the lying, sitting, and standing tests, and without hesitation ordered two blood tests (one easy, one complicated), an EKG, and also an echocardiogram. He then explained to me what P.O.T.S. was, (there are two types of it) gives me some more pointers to get me through until we were to meet again. That night after all the tests, I could feel in my gut, that this time, one of my tests were going to come back abnormal. But it could have just been my indigestion. I went back a few weeks later to hear the results and hopefully get a treatment plan going. The gods must have been listening to me, (which was nice for a change, because I was beginning to think they just tuned me out) because one of the tests did come back abnormal. It turned out I have the types of P.O.T.S. that is low blood volume/ low plasma levels. As I sit here typing this, to this very day, it gives me shivers. Words could not even began to explain how ecstatic I was, what a relief it was. I was put on iron tablets (the same one I was on before) along with a salt tablet, to try to build blood, and keep in water to increase blood mass. In October, I was back at my neurologist's office for a checkup. He seemed a little surprised, because one of the tests he had ordered up (a tilt table test) should have detected it. He and I both agreed to stick with the botox, and continue with the P.O.T.S. treatment (because the P.O.T.S. can very well cause the daily headaches). And see how things are in a year.
As your probably aware, it is March 3rd, 2013, and to this very day I still continue my daily battles with both the chronic headaches/ chronic migraines as well as my P.O.T.S. I'm not going to say it's been an easy road but I can say I am extremely overjoyed to be sitting here sharing my story with you. I don't know what tomorrow has in store for me, but I can only see wonderful things headed my way. (P.S. this isn't the full story, because that would take thirty pages and alot of tuna, for me to remember it all).
Subscribe to:
Posts (Atom)