Posted 3/4/2017 9:19 AM (GMT 0)
Hi Kristin,
I started Gabapentin right after I weaned off of my epilepsy meds once I was seizure free after my brain surgery. After this time period of being on zero meds, I started Gabapentin which helped ease the remaining pain that the nissen fundoplication did not help with. The nissen did seem to completely stop episodes of heartburn or any pain spikes related to acid, but my esophagus never stopped radiating pain. Exercising did not get any easier after the nissen, which surprised me since I had thought that acid reflux during exercise was the biggest reason that I struggled to push past the pain. The chronic post nasal drip has never decreased, and I still wonder if that ends up choking me during any type of aerobic exercise. I did manage to complete 2 bike rides across Iowa (Ragbrai) which 20,000 bikers do every year and is a bunch of fun, but the training and the actual biking ended up being a lot harder and more painful for me than I think it was for most people.
Gabapentin helped with the resting pain, but not with exercise. It helped me to not feel pain at all times of the day, and eventually when I got to 600 mg twice a day it made a huge difference in my pain to the point that it rarely bothered me when I wasn't exercising. However, shortly after starting Gabapentin, I developed severe anxiety and got prescribed Klonopin. After starting Klonopin, I developed severe depression and started taking antidepressants. After taking several SSRIs, I ended up having several ER visits from problems with rectal bleeding, dizziness and difficulty walking or registering moving objects at the speed they were moving. I even got admitted to a psych ward, where a psychiatrist who didn't listen to anything I said put me on a cocktail of psychiatric meds for depression and anxiety. I left the psych ward on 10 meds and felt so exhausted, really from then in April of 2016 all the way up to now. Once I started the cocktail of psychiatric meds, I noticed that when I close my eyes, I can see dreams without falling asleep. I believe these are called hypnagogic hallucinations, and they are fairly common with narcoleptics. I have now gone through diagnostic testing for narcolepsy and even started treatment on one medication for narcoleptics since my sleep specialist thinks that my symptoms show that I have narcolepsy. While I do not have a formal diagnosis of narcolepsy, I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), which explains the spells of dizziness and difficulty walking that started after starting SSRIs.
After being put on 10 meds total last April, I ended up seeing quite a few doctors. At the time, I was mostly focusing on following up with neurology and GI specialists since those were the areas where I had been previously diagnosed and followed up with for epilepsy and GERD plus Eosinophilic Esophagitis. In the past year, I have seen at least one GI, neurologist, urologist, dermatologist, psychiatrist, cardiologist, allergist, sleep specialist, endocrinologist, therapist, and physical therapist. I ended up going to a few GIs and not having any desire to go back to them, since they rely on scopes and every scope they ran came back clean. Half of the doctors who did rectal examinations near that first ER visit told me I had hemorrhoids, and the other half told me that I did not. I specifically remember the GI in the ER that first visit telling me that I did not have hemorrhoids and that he could not explain the cause for my bleeding, but that I was stable enough to leave the ER and I would have to see a different GI in a follow up to find an answer. The first GI I followed up with did a flexible sigmoidoscopy and found hemorrhoids but nothing else to be concerned about. He also told me that he thought my dizziness was caused by seeing blood in the toilet bowl, which I tried to assure him made no sense to me since I have seen blood from rectal bleeding many times in my life, never have had a weak stomach when it comes to getting psyched out by anything I see, and the number of days I suffered from dizziness did not make sense to be just from seeing a little blood.
I ended up going to a different GI, partly because of the first GI not believing the severity of my symptoms, and partly because I was referred to this new GI specifically for his knowledge on treating eosinophilic esophagitis. I told him about my history and my difficulty exercising, and he wanted me to get a cardiac stress test to rule out any heart related problem to my difficulty exercising. He also wanted to do a scope of his own and take his own biopsy samples to see what my eosinophils were at for a combined endoscopy and colonoscopy. He found that my results were normal except for a benign colon polyp that he removed (which seemed odd at age 21!) and signs of acid reflux scarring or esophagitis in my esophagus. He did not find eosinophils, so the esophagitis he found was not eosinophilic esophagitis. He wanted to put me on a PPI, but I know from years of trial and error that I end up getting more pain from PPIs than without, and I am just too afraid of the side effects of long term PPI use to go back on them. I was expecting all the lower GI problems I had been having to find something to diagnose, especially after my endocrinologist had found antibodies for celiac disease, but the colonoscopy ended up having nothing to diagnose. When my constipation and diarrhea worsened after my colonoscopy, I contacted the same GI to follow up with, but ended up not going back to him since I technically live 2 states away now that I have moved for graduate school. I looked up good reviews and tried to get scheduled with a GI in my new area, but he called me on the phone, listened to my description of my recent history, and told me that he would be biting off more than he could chew and would not even see me. He told me his only suggestion was to get retested for celiac disease, even though that would not even answer my ultimate question of why I still have blood in my stools regularly without appearing to have any hemorrhoids. For some reason, stool softeners, laxatives, and fiber will change my stool consistency and frequency in irregular patterns and most changes even tend to increase the amount of blood in my stools, but no doctor can pin point what I have going on.
Separate from GI issues, I have oscillating hypertension and hypotension, extreme fatigue that doesn't seem to be helped by any amount of sleep, low vitamin B12, low testosterone, depression, anxiety, and various other symptoms across all organs of my body. Even though I had been able to do a lot of exercise in the past, my tolerance for exercise got even worse this past year as every type of exercise would cause me to lose my vision. My cardiac stress test came back normal, even though I was losing my vision by the end of it. This vision loss got so bad that I have not even touched my bike since August, since I ended up losing my vision every time I tried to bike. Since then, I have even had trouble losing my vision while I walk and sometimes while I sit still. At this point, I avoid just about all walking and do not consider any exercise beyond walking. I am still going through testing for Mast Cell Activation Syndrome (MCAS) and Ehlers Danlos Syndrome (EDS), which are both common for people with eosinophilic esophagitis and POTS. I developed migraines and had some difficulty with brain fog or mental slowness that I found other people describe after taking Gabapentin.
I stopped Gabapentin with fears that it was contributing to the difficulty I have been having studying in graduate school. I was on Gabapentin for about 15 months, and while my pain is only slightly higher now that I am off of it, I have not noticed many other differences. It is definitely hard to tell to what degree Gabapentin and other medications following it caused the symptoms I developed, and to what degree the timing might just be coincidental. I developed migraines right around the same time that I started taking supplements for vitamin B12, but no doctor will even consider that there could be a link between those. I also am not struggling as much from pain because I have so much else going on, but I do believe the claims that Gabapentin leads to brain fog are definitely valid.
My wrap has also found to still be intact in my most recent scopes. Considering your chest tightness, I will just say that testing for POTS is very easy to have done, even if your testing finds that you do not have it. Look up a tilt table test, as well as a poor man's tilt table test. The first involves a platform that adjusts the angle you are lying in. Your pulse and blood pressure get measured as you go through different body positions, and if your pulse increases by a certain amount of points, it is diagnostic for POTS. A poor man's tilt table test just involves you moving from lying down to standing at home and measuring your pulse in both positions. If you have a significant change in pulse as you change body position, you might be able to ask a doctor about treatment for POTS.