I recently got an opportunity to talk with a representative from the Diamond Headache Clinic and they have shared this awesome presentation on childhood migraines, including abdominal migraines that were actually one of the first diagnoses I considered when I first began looking for answers to explain some of the many gastrointestinal symptoms I had as a young child myself. I thought this presentation could be a really good resource to share here in case any of these symptoms can help anyone still looking for answers for their own symptoms.Courtesy of https://www.diamondheadache.com/
Since leaving my job for medical reasons, I can’t even count how many times I’ve heard that I’m so lucky to be able to stay home every day and not have to work anymore. Every time I hear this, though, I feel sick inside.
In one way, they’re right – I am lucky… Lucky I’m not killing myself anymore by going to work with a serious illness; lucky I’m not putting both myself and other people in danger just to get there and back; and lucky I’m not hurting the business or even patients by not functioning effectively enough to maintain my job. Unfortunately, there are some people with chronic illnesses who don’t have that same choice. So yes – I am extremely lucky in that sense.
However, not working is also a huge burden – on my family, on my finances, on my physical and mental health, on my self-esteem – on pretty much everything in my life. I would do almost anything in the world to feel better and get myself back to working – I’m trying anything and everything I can to hopefully get back there one day.
This isn’t an extended vacation – this is chronic illness.
I’ll trade you non-stop doctor and hospital visits, medical tests that are painful, surgeries that don’t fix the problem, being referred to psychologists and having people question your sanity, the inability to eat without being in pain or sickness, disability and insurance denials, being called a drug seeker, and being judged by nearly all of society just to go back to work.
Hope you don’t mind if chunks of your hair fall out, or that you pass out nearly every single time you have to take a shower. I hope that you’re not afraid of needles. You won’t mind having some brain fog, would you? It’s when you can’t remember anything – good luck doing my homework and writing that paper for me.
Oh, you also have some errands to run just to get the necessities of course but don’t forget the fact that you can’t drive anywhere by yourself. Your friend’s having a party that’ll you’ll have to miss and your other friend is mad at you because you don’t hang out with them enough. Those are the only two friends you have left though because no one else cared to stick around, not even most of your family.
Also, don’t forget to take those 13 different medications at different times throughout the day. Heads up – some make you really, really sick, others make you feel really tired and unable to function, and some keep you up all night. You can’t have any pain meds, though, because then people will just think you’re an addict – you didn’t need them anyways, right? Again, I’ll gladly trade places if you’d like – since I’m so lucky that I can’t work.
Being able to work is a huge privilege,
although many “healthy” people tend to forget this.
For the chronically ill, Labor Day is often just another reminder of what we many of us have lost to our illness. So when you’re off celebrating tomorrow, don’t just be grateful for having a day off- be grateful for your health giving you the opportunity to do so and please be thoughtful of those who may not have that same chance.
Back in April, I finally got an appointment with the neurologist here in my town after waiting over a year for my new patient appointment. Although I had a neurologist up in Denver in the interim, he was simply just an okay doctor in my opinion – while he supported my theory of a POTS diagnosis (which I ultimately received last summer), he kept referring everything to my cardiologist and didn’t really seem that interested in doing his own investigation of my symptoms. He was also an hour’s drive away when there was little to no traffic, so I was obviously excited to finally have a specialist here in town. Immediately after meeting with the new doctor, I could see why there was such a long wait to get into the practice – she was fabulous!
After reviewing my case in detail, she was horrified that no one had done an MRI of my head as of yet – Thank you! That’s what I’ve been saying – especially considering the number of head injuries I’ve had back when I was cheerleading. She also ordered another Electroencephalogram (EEG) since evidently my first EEG was only reviewed by the technician who performed it and was never signed off by my neurologist, which was a lovely finding I might add. Thankfully, my EEG came back as being normal again, confirming that I was NOT having temporal lobe or partial seizures as both neurologists had suspected based on my primary neurological symptoms of migraines, cognitive impairment, visual aura, and olfactory hallucinations. Basically, the negative EEG results confirmed that I was suffering from Status Migrainous or intractable chronic migraines as originally suspected. Although I had started taking gabapentin after my first appointment with the neurologist, which seemed to provide a little bit of relief of my symptoms, the doctor decided to also start Botox Injections since the migraines were confirmed to hopefully get them under control.
I had my first injections back on May 4th and so far they have really helped. Although my migraines have not completely disappeared as of yet, they have been less intense and a lot less frequent than they were prior to the injections. However, they do say it can take a few rounds before they will know if it will work effectively, so I’m hopeful that they will only continue to improve after my next appointment with neurology in August. Nevertheless, I was much more anxious about what the MRI would [or would not] show than the results of the EEG.
To my surprise, the MRI showed that my brain was fine. There were no brain lesions, tumors, growths, signs of stroke, etc., which was really good news. The rest of my head, though, not so much…
MRI of the Head/Brain W/O Contrast
The brain parenchyma is unremarkable. The diffusion weighted images demonstrate no evidence of recent infarct.No evidence of hydrocephalus. The pituitary gland, pineal gland, and corpus callosum regions are normal in appearance. There is no intracranial hemorrhage. No extra-axial fluid collections are present. The orbits, cavernous, and para cavernous regions are unremarkable.
The paranasal sinuses demonstrate complete opacification of the right
maxillary antrum, with maxillary sinus wall thickening, suggesting chronic sinusitis. There is a rim of T1 shortening and associated susceptibility within the mucosal thickening, which could represent inspissated mucus or possibly allergic fungal disease. There is no associated expansion or erosive change identified to suggest mucocele. There is a retention cyst within the right sphenoid and likely along the roof of the left sphenoid. Mild mucosal thickening within the left maxillary antrum.
The calvarium, skull base, and craniocervical junction are preserved. Normal vascular flow-voids are identified.
- Unremarkable MR appearance of the brain without contrast.
- Paranasal sinus disease as described, including complete opacification of the right maxillary antrum, with suggestion of chronic maxillary sinusitis. Ring of T1 shortening and susceptibility within the right maxillary antrum could represent inspissated mucus or possibly allergic fungal disease.
So what does all this mean? According to the neurologist, it means that I needed a quick referral to an ENT for evaluation. Great – another new doctor.
At the same time all this was going on, I also had two other MRIs (aside from the one on my brain) to evaluate the acute pain I suddenly was having on my right side that further radiated down into my pelvic region. Although the first MRI was supposed to be on both my abdomen & pelvis, it only was approved as an abdominal MRI. Not surprisingly, since it didn’t show anything other than the vascular compressions seen on my earlier CT scans, they ended up having to order another MRI of my Pelvis a few weeks later. Thankfully, given the amount of time that had passed between tests, the concern about appendicitis had pretty much been ruled out.
MRI of the Pelvis W/ and W/O Contrast
Pelvis Mesentery: Small quantity of free fluid within the posterior dependent pelvis, primarily within the rectouterine pouch of Douglas with trace fluid also adjacent to the lower aspect of the uterine fundus.
GI: Small tubular structure originating from the base of the cecum, just below the terminal ileum, with location and appearance most consistent with the appendix, normal in appearance and size (for instance image 41 series 6). No abnormal
surrounding T2 signal and no abnormal contrast enhancement about the terminal ileum or appendix region. Normal appearance of the terminal ileum (for instance image 37 through 39 series 6).
Uterus: Uterus is normal in size and appearance, with normal anteflexed uterine
fundus. Cervix is normal in appearance by MRI evaluation.
Adnexa: There is a 1.8 cm peripherally enhancing cyst in the right ovary, with mild heterogeneous internal T2 appearance, with normal internal T1-weighted isoechoic appearance. Several small follicles in bilateral adnexal regions.
- Small 1.8 cm peripherally enhancing cyst in the right ovary. Small quantity of free intrapelvic free fluid. Right ovarian cyst may represent a previously ruptured right follicular cyst. Per current radiology criteria no further specific follow-up for this right ovarian cyst is required.
- No MRI findings to indicate appendiceal pathology, including no abnormal edema or enhancement surrounding the cecum or appendix.
Although it states in the report that no further up was needed for the ovarian cyst according to radiological criteria, my gastroenterologist disagreed and, therefore, referred me to my gynecologist for further evaluation.
At first, my gynecologists wasn’t extremely concerned about the findings of the report. However, there was some concern was that the cyst did have a heterogeneous appearance, although this could mean anything from being benign growth all the way to cancer. He sent me for a follow-up transvaginal ultrasound, which he said was the preferred method for evaluating ovarian cysts, just to be safe.
US Pelvic Transvaginal
The myometrium is heterogeneous but no distinct mass. The endometrial stripe is within a normal range for age. There is a small amount of free fluid. Both ovaries are well-visualized. In the right ovary, there is a partially collapsed but otherwise simple appearing cyst in the right ovary, which on my repeat measurement is 17 x 9 x 15 mm in size. The larger area measured by the technologist is not well-defined and likely includes normal variant parenchyma. Otherwise, there are simple follicles
Both ovaries are well-visualized. In the right ovary, there is a partially collapsed but otherwise simple appearing cyst in the right ovary, which on my repeat measurement is 17 x 9 x 15 mm in size. The larger area measured by the technologist is not well-defined and likely includes normal variant parenchyma. Otherwise, there are simple follicles under 1 cm in size in both ovaries.
- 17-mm partially collapsed but otherwise benign-appearing right ovarian follicle.
The good news was that the cyst itself was benign. The bad news, however, was that the cyst had virtually stayed the same size during the month and a half between testing, despite being collapsed in both scans. Basically, the cyst seemed to be refilling itself over and over with fluid (likely blood), thus explaining the free fluid throughout my pelvis that should not have been there.
The doctor gave me a shot of Depo-Provera, which contains the hormone progestin, in hopes of getting rid of the cyst since it likely wasn’t going to go away naturally on its own. If the shot didn’t help to get rid of the cyst in 6 weeks, the doctor informed me that it would have to be surgically removed. Great…
Lucky for me, however, the Depo did its job and the cyst was virtually gone during the next transvaginal ultrasound.
Just as one surgery was crossed off my list, another one was added. After I met with my new ENT about the results of my head MRI, he ordered a CT of the head to confirm the extent of the damage marked in my first scan. As expected, it only accentuated the fact that I would need surgical intervention on my sinus cavity.
CT Sinus Complete
The sinuses are normally developed bilaterally.
The frontal sinuses are normally aerated. Minimal thickening cannot be excluded in the left ethmoid sinus. Right ethmoid sinus is normally aerated.
There is marked diffuse opacification of the right maxillary sinus, consistent with marked chronic inflammatory disease, and associated thickening of the inferior and lateral maxillary sinus bony wall. Small areas of probable calcification representing debris are noted within the chronic inflammatory tissue.
Minimal thickening is noted involving the left maxillary sinus.
The right ostiorneata complex is obstructed. The left ostiomeatal complex is patent.
Mild thickening is noted in the right component of the septated sphenoid sinus .
There is very minimal undulation of the nasal septum, but no significant deviation.
I just had endoscopic sinus surgery this past Friday, which including a septoplasty, turbinate reduction, antrostomy, and sinusplasty. So far, everything has been going good, except that the recovery has been much harder than I had originally expected. I’ll go over all the fun details, with pictures, hopefully in my next update.
Although all of this may seem like a lot, I still haven’t gotten to the best part – A new vascular surgeon and substantially larger surgery here in the near future – but that is definitely a story I’ll have to share another day.
After my venogram in December and the fiasco at my follow-up appointment to discuss surgery, I had pretty much given up hope that A) we had finalized a diagnosis and B) that I would ever get better. Unfortunately, my next round of follow-ups with the specialists weren’t much better.
By the time my follow-up with gastroenterology had rolled around at the end of January, I knew there really wasn’t much left to do as every GI test had been run up to this point and I was expecting to be let go after a full year of testing with really no results. As I’m sitting there in her office, explaining how once again I won’t be having surgery as expected, she asks me why they offered me the one surgery in the first place if they knew it wouldn’t help. I honestly have no idea what to tell her – Why don’t you ask them? – I don’t dare say that out loud, though.I look over to see my husband is once again fidgeting in his chair, I can tell he’s getting angsty. However, I wasn’t anticipating what happened next.
In almost slow motion, I watched him mouth the words …because nobody takes her pain f***ing seriously….one syllable at a time. He didn’t just say that out loud, did he? The doctor immediately asks him to leave. Okay, so I guess he really did say that out loud after all. I can tell my doctor was not amused as my husband gets up from his chair and storms out, and I just sit there, on the exam table, in shock. Now, what? I wait for her to say something but I’m having a hard time holding back the tears in embarrassment and frustration. Really, though, my husband was right – no one does take my pain seriously and I’m becoming more and more tired each day. I really just want to go home at this point.
But somehow, the torture isn’t over for today. She says she wants me to have an anorectal manometry done to rule out pelvic floor dyssynergia for constipation that I have on and off. This is a joke, right? Nope, guess not. She thinks it’s in my head…. that maybe somehow I forgot how to have a bowel movement… I think she is far off with diagnosis. She thinks I should do it anyway. I agree… knowing I”ll prove her wrong… but finally able to leave. I’m not sure how this could get any worse, really… but somehow it always does.
WHAT IS ANORECTAL MANOMETRY?
(Retrieved from the Motility Society Website)
Anorectal manometry is a test performed to evaluate patients with constipation or fecal incontinence. This test measures the pressures of the anal sphincter muscles, the sensation in the rectum, and the neural reflexes that are needed for normal bowel movements.
Give yourself one or two Fleet® enemas 2 hours prior to your study. You can purchase the Fleet enema from a pharmacy or supermarket. You should not eat anything during the two hours prior to the procedure. If you are diabetic, this may involve adjusting your diabetic medications. You may take regular medications with small sips of water at least 2 hours prior to the study.
The test takes approximately 30 minutes. You will be asked to change into a hospital gown. A technician or nurse will explain the procedure to you, take a brief health history, and answer any questions you may have. The patient then lies on his or her left side. A small, flexible tube, about the size of a thermometer, with a balloon at the end is inserted into the rectum. The catheter is connected to a machine that measures the pressure. During the test, the small balloon attached to the catheter may be inflated in the rectum to assess the normal reflex pathways. The nurse or technician may also ask the person to squeeze, relax, and push at various times. The anal sphincter muscle pressures are measured during each of these maneuvers. To squeeze, the patient tightens the sphincter muscles as if trying to prevent anything from coming out. To push or bear down, the patient strains down as if trying to have a bowel movement. Two other tests may be done: first, an anal sphincter electromyography (EMG), a test to evaluate the nerve supply to the anal muscle; second, measurement of the time it takes to expel a balloon from the rectum. After the examination, you may drive yourself home and go about your normal activities.
Anal Sphincter EMG
Anal sphincter electromyography (EMG) is recorded with a small plug electrode placed in the anal canal. The patient then is asked to relax, squeeze and push at different times. The anal sphincter muscle electrical activity is recorded and displayed on a computer screen. Anal sphincter EMG confirms the proper muscle contractions during squeezing and muscle relaxation during pushing. In people who paradoxically contract the sphincter and pelvic floor muscles, the tracing of electrical activity increases, instead of decreasing, during bearing down to simulate a bowel movement (defecation). Normal anal EMG activity with low anal squeeze pressures on manometry may indicate a torn sphincter muscle that could be repaired.
Balloon Expulsion Test
For this procedure, a small balloon is inserted into the rectum and then inflated with water. The patient goes to the bathroom and tries to defecate (expel) the small balloon from the rectum. The amount of time it takes to expel the balloon is recorded. Prolonged balloon expulsion suggests a dysfunction in the anorectum area. What can be learned from anorectal manometry? The anal and
WHAT CAN BE LEARNED FROM ANORECTAL MONOMETRY?
The anal and rectal area contains specialized muscles that are helpful to regulate proper passage of bowel movements. Normally, when stool enters the rectum, the anal sphincter muscle tightens to prevent passage of stool at an inconvenient time. If this muscle is weak or does not contract in a timely way, incontinence (leakage of stool) may occur. Normally, when a person pushes or bears down to have a bowel movement, the anal sphincter muscles relax. This will cause the pressures to decrease allowing evacuation of stool. If the sphincter muscles tighten when pushing, this could contribute to constipation. Anal manometry measures how strong the sphincter muscles are and whether they relax as they should during passing a stool. It provides helpful information to the doctor in treating patients with fecal incontinence or severe constipation. There are many causes of fecal incontinence. Weak anal sphincter muscles or poor sensation in the rectum can contribute to fecal incontinence. If these abnormalities are present, they can be treated. Biofeedback techniques using anal manometry and special exercises of the pelvic floor muscles can strengthen the muscles and improve sensation. This can help treat fecal incontinence. There are many causes of constipation. Some involve sluggish movement through the whole colon, whereas others involve the anal sphincter muscles. In some patients with constipation, the anal sphincter muscles do not relax appropriately when bearing down or pushing to have a bowel movement. This abnormal muscle function may cause a functional type of obstruction. Muscles that do not relax with bearing down can be retrained with biofeedback techniques using anal manometry.
Risks of Anorectal Manometry
Anorectal manometry is a safe, low risk procedure and is unlikely to cause any pain. Complications are rare: it is possible that a perforation (tearing) or bleeding of the rectum could occur. Equipment failure is a remote possibility. If you are allergic to latex, you should inform the nurse/technician before the test so that a latex free balloon can be used.
Let’s just say I was less than thrilled to have to do this test. Just the idea of having to take two fleet enemas and administer them on my own was enough to get me to freak out. Not to mention, since the test was over an hour and a half drives away, they told me to do it the night before. I was still petrified that I would have some embarrassing accident for sure. Not only did the cleansing make me super sick and dizzy, passing out every few minutes, but also had a lot of pain and bleeding afterward as well. It was almost as bad as the colonoscopy prep, only luckily I didn’t have to drink anything. Up until five minutes before leaving, I was still passing a good amount of blood. Nevertheless, I went to my scheduled appointment anyway.
Luckily, my nurse was very nice and calmed me down as I was very tense going into this test. Still, I was in a lot of pain and worried I’d embarrass myself so I was quite reserved. Along with using a balloon they also did the sponge test to see if I could “pass it”. Let me tell you, it felt like I was trying to pass sandpaper. It was horrible and I was in tears. The nurse tells me everything was within normal limits but a doctor would double-check my results to be sure. I figured my test would be normal anyways and I was just happy I was able to go home to recover.
When my follow-up with GI came around in March, I was far from prepared when the doctor told me that my manometry was positive and that I did, in fact, have pelvic floor dyssynergia. Excuse me, what? She’s sending me biofeedback therapy twice a week. Great, I think, just what I have time for. I honestly don’t know how this is possible based on my symptoms, but I schedule therapy anyway.
After weeks of going to biofeedback therapy twice a week, my symptoms were anything but better. In fact, the extra added stress of trying to make it to therapy twice a week, on top of everything else, likely made everything worse. It was actual torture and I was starting to feel like this was punishment for my husband disrupting the appointment. The therapist also focused more on relaxing my vaginal muscles more than relaxing anything else, which I found to be useless in all honesty. How was this teaching me how not to be constipated, again? They kept asking me if I was eating – of course I’m not eating, that’s what causes the pain, but nobody listens to me. The honest truth, each and everyone one of my muscle in every area of my body hurts. They are tense because I am always in intense pain every single day. I’m getting angry. I ask for a copy of my test results because I honestly don’t understand how I have this condition in the first place and all the results in biofeedback therapy are coming back as normal.
When the report finally comes in, my test was borderline at very best. I knew it! I likely didn’t have completely “normal” results because I was in pain while “pushing” and now I’m really angry that I have wasted my time.
Within a few hours of reading the test results, I get a message from the radiologist that I had sent my GI scans to a few weeks back to review for me. I had asked him to look at them for me since every doctor kept denying that I had superior mesenteric artery syndrome when the reports kept saying I had it, or the doctor would say I have the right angle for the condition but because I didn’t have dilation in my other GI scans, I couldn’t have it. Sure enough, the radiologist had confirmed not only the angle and the aortomesenteric distance, but the dilation of my duodenum was missed in three separate scans.
According to Karrer et al. (2015), the “CT criteria for the diagnosis of superior mesenteric artery syndrome include an aortomesenteric angle of less than 22 degrees and an aortomesenteric distance of less than 8-10 mm” (para. 1). My aortomesenteric angle was 17 degrees and my aortomesenteric angle was 4mm.
When I went to my next biofeedback appointment, I share the diagnostic news with my therapist. She asks me if biofeedback has helped at all, which I of course reply that it hasn’t. She feels like the diagnosis is incorrect as well and decides to dismiss me from therapy. I have yet to follow-up with GI doctor but I have an appointment scheduled with her in a couple of weeks. Not sure how this is going to go, but I think this will be the last time that I see her – officially. Things were missed in my testing that was super important and I could have been treated over a year ago when the testing first mentioned the findings of all these conditions. Again, if only these doctors would have listened to me or checked the scans themselves. My husband was right, despite his behavior that day. On top of it all, I was diagnosed with a condition that I feel was more of a punishment than something I believe the doctor would honestly never think that I have since I do not have 99% of the symptoms of pelvic floor dyssynergia.Needless to say, it’s going to be interesting to an interesting follow-up. Maybe I’ll bring my husband with me one more time…
Karrer et al. (2015). Superior Mesenteric Artery Syndrome Workup. Retrieved from http://emedicine.medscape.com/article/932220-workup
Motility Society (2005). Patient Information on Anorectal Monometry. Retrieved from http://www.motilitysociety.org/patient/pdf/Anorectal%20Manometry%20Patient%20Information%208%205%202005.pdf
Yesterday was my birthday.
I received so many birthday wishes, from both friends and family,
as well as some pretty amazing and thoughtful gifts.
The weather was even perfect today- sunny and warm.
I was able to even eat a cupcake, although it took me about 6 hours to finish it.
There’s something very nostalgic about birthdays. I dunno what it is about this “special day” but it’s like somewhere inside of you says, “maybe now you should reevaluate your life because your older or wiser than you were [only] yesterday”. Am I honestly any wiser today? Even if I was, wouldn’t the same hold true then for every other day throughout the year and not just on the anniversary of our births? Still, I found myself last night looking back over my life over the years; about all that has come and all that has gone. Again, very bittersweet.
Birthdays were always such a big to-do when I was younger. As you get older, though, they just don’t mean the same as they once did. Add ongoing symptoms, new medications (again), and enlarged lymph nodes for seemingly no reason and it makes partying on your birthday nearly impossible. Plus, I’m tired. Plain and simple. T-I-R-E-D. Rest at this point is like an unexpected gift all on its own.
Obviously, I wasn’t up for much this year. In fact, I wasn’t up for anything last year either, although it felt more understandable – at least in my own head, anyway. I was just getting back to work after being on medical leave for a month, despite still being sick and undiagnosed at the time. I was still fighting insurance and undergoing nonstop medical testing. Yet, here I am – a year later, still is nearly the same position (sigh).
I can’t shake the feeling that there was supposed to be something more. That, somehow, this year was going to be different and 2016 was going to be MY year. I honestly felt guilty that I didn’t want to do anything for my birthday as weird as that sounds – like I was a disappointment because of it. I felt guilty that I didn’t want to do anything as if I was a disappointing everyone by not doing something super-spectacular to celebrate this year.
“What did you do for your birthday today?”
“Oh, you know. I got to sleep in. That was nice. Then I ran a couple errands with my husband. I didn’t work on too much homework today. I tried not to focus on any healthcare stuff. You know, I really gave myself a break today. I even ate a cupcake – It really was a great day.”
“So, you didn’t do anything…?
It’s not like no one offered, of course. It’s just that doing nearly anything these days feels like a chore. My stomach always hurts, my hair keeps falling out, I can’t drive anywhere anymore, my lymph nodes are swollen, I can’t eat anything, and the new meds make me so dizzy and I’ve been having extreme vertigo in addition to the all the other “normal” (a.k.a. everyday) symptoms. Plus, I keep falling over. It’s embarassing. I have a nice bump on my forehead from “kissing” the wall the other night while trying to go up the stairs (I guess the wall wanted to wish me a happy birthday too!). Regardless, today was exactly what I needed and asked for this year. To me, it was the perfect birthday.
A very merry dysautonomic birthday, indeed.
Among a ton of really good gifts, I also received some dysautonomia gear that followed along with this year’s dysautonomia birthday theme, including the following:
Like I said, it really was a great day.
The good days are hard to come by lately,
so thank you to everyone who wished me a happy birthday.