{My Chronic Illness – Diagnosis}

What is your illness, Rebekah? What’s wrong with you?

Isn’t that the big, award-winning question.

I decided to dedicate a page to this explanation so that it could be easily found. I will try and explain the different diagnosis I have received as well as I can. I’m not a doctor, so things may not be “explained exactly right” or use the “correct terminology”. However, I really want to get my story out there. For my own sake as well as for others. It is a really difficult, lonely place to feel like nobody really knows or understands what you are going through. It is also frustrating to realize that the practice that ended up being a big “answer” for you is so little-known. I will try and focus on the diagnosis parts of my story on this page, so if you are looking for more information on my journey there please see My Journey or read through my blog posts.

SO. I’ll just jump right into this.

My health started to really decline during my freshman year of high school. It continued to decline up until my health really took a nose-dive during the first semester of my freshman year of college. I came home October 8 of 2014.

I was diagnosed with P.O.T.S (Postural Orthostatic Tachycardia Syndrome, read more here or here) in December of 2014 by a tilt-table test. They have medications they recommend for POTS symptoms. They also recommend lots of salt, fluid, and an exercise program created especially for this condition. Unfortunately, I was genetically unable to take the medications they offered. Salt provided little help, and a “lot” of salt ended up with a painful pressure headache. I was too weak, too dizzy, too unstable for any sort of exercise program. I steadily grew worse. There was a point where I walked from my bedroom to my kitchen (same floor of the house) and my pulse went up to 150’s. I began having POTS episodes nearly every day. This would involve my heart rate dipping down low, and then shooting up high as my blood pressure fell and over-corrected. This meant my pulse would sometimes drop into the 40’s and then sky-rocket to the 180’s as my blood pressure fell and over-corrected. It felt terrible. It didn’t matter if I was sitting, standing, or lying down… It could happen at any time, though standing and walking seemed to make me more susceptible to it. I could not tolerate wheelchairs, car rides, TV, music, loud noise, people walking by me (the vibrations)… I lost weight, eventually losing around twenty pounds, which is a lot when you don’t have much to lose to begin with. When my health was doing well, I was around 106. I dropped to around 88.

Everything just felt like it was slowly shutting down. I have genetic mutations (genetic mutations in metabolic pathways) as well as other genetic factors that mean I can’t take a lot of medications or some of the average vitamins, and I don’t do well with a lot of them anyway. Sometimes they won’t work, sometime’s I get awful side effects. When I was at rock bottom, doctors quit wanting to even mess with my body. They told me I was too weak. I couldn’t tolerate treatments. I had no relief from pain, no relief from anything. It was a nightmare.

I could talk more on that, but in order to keep this “short”, I’ll move on. Just know that it was a fearful, desperate time. Doctors did not seem to know what to do anymore. It felt like my body was slowly shutting down as I lost the ability to really walk or move around much. I would spend days at a time in the same spot on the floor, aside from crawling/being carried to the bathroom. It was rough.

Mid-January of 2015, I started having difficulty swallowing. This unfortunately progressed until I was unable to swallow solid foods anymore, and I started to even lose my voice. My doctor did not know how to help. We tried a chiropractor, but after a POTS episode in front of their nurse (who cried watching me), she seemed very reluctant to do anything on me. I was too weak, my body too sensitive. She referred us to Dr. Sean Hubbard, a chiropractic neurologist.

I don’t even want to think about where I would be at if I had not found this doctor. It was a miracle.

This is a short video that shows a bit of the work that chiropractic neurologists do.

The story of the woman who just wanted to be able to hug her kids? That is the story of my doctor’s wife.

It is confusing. It is confusing to watch, it is confusing to be a part of. But let me tell you, it works.

This began my journey with a vestibular disorder, which eventually lead to us finding that it has so far appeared to have been the cause of my POTS as well as many other of my debilitating symptoms. As we have continued to treat the vestibular disorder, the POTS symptoms have subsided.

Here is an entry from My Journey from those first few visits.

January 30- Unfortunately, the throat/swallowing issues were not because of acid reflux. (That would just be too easy, wouldn’t it?) I was finally recommended to some sort of neuromuscular doctor, and he is the most kind doctor I have ever met. Long story short, he has worked on me several times, and I will be doing an intense treatment three days next week, 9AM-5PM intermittently throughout the day. I am praying that this will help me to at least function a bit better with my dizziness, and maybe, just maybe, calm down my nervous system so I am not so incredibly sensitive to pain. I have even heard of it sometimes helping with POTS symptoms. As far as my throat went, however, this was where we found some answers. My neuro system is pretty sick… This has caused my right leg to drag some, tremors, and one of the biggest things right now was one side of a part of my throat is not functioning as it should, making it frequently feel like I am choking, unable to breathe, of in a significant amount of pain from it, which even keeps me from speaking at some times.

One of the “flaps” in the back of my throat was not working like it should. With treatments, my throat began to function as it should.

February 5- Is that hope I feel? Real, raw, vulnerable hope? The doctor I went to treatment to this week Monday-Wednesday was greatly encouraged by the results he was seeing. For the first time in five years, something actually went (about) according to how a doctor thought it would go. He believed it would fix a lot of symptoms. The system of my body that basically controls everything that you don’t (or shouldn’t) have to think about doesn’t work correctly. (Some examples; swallowing, breathing, heart rate, blood pressure, digestion…) According to this doctor, he has a chance of either greatly helping my POTS heart symptoms, or maybe… Making them almost completely go away. Of course, as I think we all are who have suffered greatly and for long periods of time, I am afraid to really put much hope into this until we know for sure. But the signs have looked good so far. If this treatment is successful, I sure as heck will be spreading around the details in case it can help other POTS warriors like me.
Treatment is exhausting. After months of being almost completely bedridden, and four months homebound, it was especially exhausting for me.  My neck muscles couldn’t hold up for part of the treatment, resulting in needing a neck brace to keep going. If it is a possible successful treatment though? Absolutely worth it.

As time went on, more and more improvements began to show themselves. The treatments involved (in non-doctor terms) very specific movements that would trigger very specific parts of the brain. This could ‘amp up’ an area of the brain that wasn’t working so hot, or bring things more into balance if something was overworking. It was truly incredible work… It just makes you wonder why it is not more well-known? It scares me to think I could have so easily never known about this practice that saved my quality of life… and maybe my life entirely.

February 18- The hope is growing stronger. This chiropractic neurologist has taken my general standing heart rate from 140-150 to 95-110. I am far from living a normal life but hope is calling my name on the horizon. I feel energized and stronger. God answers prayers. I believe that I am on the road to healing.

Around March 17 of 2015, he tested me for BPPV. I had been tested months before my an ears/throat specialist, but they had apparently not tested for one kind – the rarest kind. Of course, I had it. There is more on BPPV and my experience with it on My Journey page if you scroll down to March 17 of 2015.

April 4, 2015- Anxiety symptoms have been worse recently as my brain comes out of it’s “survival state”. The human brain is an amazing thing. During the worst parts of the earlier months, I became a mere shell of the person I used to be. I no longer felt human, I felt NOTHING like myself. I am now starting to experience more human-like feelings and emotions again. Unfortunately, I have a lot of trauma and anxieties to deal with now…  I am also working on trying to start to train my brain to work right again. It is so frustrating. I used to be a big reader, but now I can only read small amounts at a time. My brain can no longer do some tasks as well as it used to.

Alright, long explanation ahead. I wish I was better at explaining this. I am planning on making a video of me explaining it all… I feel like it would be easier to understand that way. Unfortunately, it takes quite a bit of energy to go through this, and I just don’t have that kind of energy yet.

So until then! Read on. 🙂

One of your brain’s most important jobs is to know where you are at in space and to keep you upright.

It is supposed to be an automatic job that your brain is aware of your surroundings and able to work well with the vestibular system to keep your sense of balance and sense of where you are physically at. Unfortunately, the vestibular system is well-integrated into the rest of your system. When things go wrong with the vestibular system, it can wreck havoc all over the place.

When my vestibular system started to not function correctly, my brain devoted more and more of it’s “brainpower” to just trying to keep me upright and knowing where I was at. Unfortunately, this meant less brainpower directed towards the other areas of my brain, which suffered.

So (to my understanding) there is nothing wrong with my muscles, or other areas of my brain.. It was just concentrating so much on that one job that everything else suffered. (my limp, tremor, eyes/smile crooked, dizziness, lightheaded, brain fog, loss of emotion/overload of emotion, anxiety, paranoia, PTSD, sensory overload, hard to to concentrate, my autonomic nervous system dysfunction (this includes POTS), stomach didn’t work well, nausea, vomiting, vestibular migraines (I think this is related to what was going on), depression, I felt like I lost a lot of who I was for a while, great difficulty with swallowing, fall-risk, could not really think well logically, inability to tolerate quick movement, could not walk and solve problems at the same time, eyes could not track moving things well, eyes could not stay focused on an object, insomnia, couldn’t tolerate loud sounds/ music/strong smells/people walking past me because of the vibrations, ect.) Your brain basically is in control of everything. So that was a lot of crap. I’ve been told a lot of my symptoms are actually somewhat similar to post-concussion syndrome, if that helps at all.

As the rest of my brain is starting to slowly function better, I am starting to feel more like myself. However, as of June 17 of 2015, I am still dealing with the anxiety/paranoia/PTSD (though it is getting a bit better as the logical part of my brain begins to work better), the sensory overload especially with places with lots of movement/colors/busy backgrounds or loud sounds/multiple conversations going/strong smells, ect. (still get dizzy/lightheaded with this), difficulty concentrating, what feels like some occasional symptoms of POTS (but nothing like it was before!), nausea a few times a week (mostly with migraines), the vestibular migraines, off and on depression, can still be difficult sometimes to tolerate quick movement especially because of my eyes (mostly when I’m tired), insomnia, can’t tolerate loud sounds/music still.

I think that kind of sums up where I’m at. I also still need to look into all the genetic issues that we have found, or else they will give me problems later on. We still need to find a doctor who is well educated on those things, as it is a part of “newer” movements in medicine. We also don’t know what caused this to happen to my vestibular system in the first place. My neuro thinks it has been going on for quite a long time, which would explain a lot…

I hope that all makes sense!

IN SUMMARY:: POTS (DUE TO VESTIBULAR DISORDER(?), VESTIBULAR MIGRAINES, GENETIC PROBLEMS WITH MEDICATIONS, GENETIC MUTATIONS IN METABOLIC PATHWAYS.

I will also touch base on the POTS issue a bit more. When you are diagnosed with POTS, you go home to look up more about it… and find that there is no known cure. It is not a disease, but a condition. A group of symptoms. Hence, one person with POTS may have a very different story than someone else suffering from POTS. So, no, friends. POTS was not my “final answer”. I really believe that generally, there is a cause to why POTS makes its appearance. For me, it seems to have been because of a vestibular disorder. This means that chiropractic neurology will not be the answer for everyone… but it may be the answer for some. It will be while longer before we know for sure, but this treatment has seemed to take care of the POTS symptoms.

Please, if you think that this may help you or someone you know at all, don’t hesitate to comment or send me an email at itspotsable@gmail.com to ask me more questions. There are only about 200 doctors worldwide that work in this very specific field. It is truly a unique and incredible work. It involves no medication and around 75% of the time, they can know from your first visit if they may be able to help you. I had completely lost my quality of life until I, by an incredible miracle, was directed to this doctor. Please help someone else find their answer as well. Here is some more information on symptoms of a vestibular disorder.

Thank you for reading!