Vestibular Disorder – Seeking Anyone Who Might Have Had A Similar Experience

I have been meaning to write a blog post in regards to my vestibular disorder for quite awhile, but just never got around to it. However, I am hoping that by finally writing this post and sharing it on various social media platforms, that I might reach someone else who has been suffering from the same thing or a physical therapist/occupational therapist who has seen something similar. I will try to make this as detailed as possible, without also being 7 pages long! Quick introduction, the vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements, for anyone who isn’t familiar.

So in the fall of 2014 I started weaning off of a really wonderful cocktail of medications mainly for my anxiety. I had been put on these medications by my GI doctor, OB/GYN, spinal doctor & my GP. They all knew the other medications I was on when they prescribed what they each did. From my experience, most GPs shouldn’t be prescribing drugs for anxiety or depression, it is one of the reasons I got into the medication situation I was in. (Note: My GP’s office has since changed their medication protocol for controlled substances and the doctor who put me on two different benzodiazepines at the same time got in trouble.) I do have to mention it is also my fault for not researching the drugs I was prescribed, but I trusted my doctors. Drugs like Ativan and Xanax are very effective when treating anxiety, but are meant to only be taken as needed or everyday on a very short term basis, like 6-7 weeks, not 4 years. It is also standard to start at the lowest possible dose and increase as needed, not start out at 3-4 milligrams. So I am going to list the medications I was on, since once again I am hoping to find someone has been in a similar situation. The milligram amounts are the starting dosage that I was on before I started tapering them off or stopped them.

Ativan: 3mg per day
Xanax: .50mg-1mg per day
Elavil: 20mg per day
Percocet: 5mg as needed
Ortho Tri Cyclen

The Elavil was prescribed by my GI doctor for my IBS and I had previously taken it on and off over the years at varying doses. The Ativan and Xanax were prescribed by my GP after we spent years trying many different SSRI’s with either a negative effect or no effect at all. These drugs were prescribed to treat my Generalized Anxiety Disorder, Agoraphobia and Panic Disorder. The Percocet was prescribed by my spine and scoliosis doctor for my neck and back pain and I only took it as needed, maybe 1-2 times a week if that and sometimes I only took half. The Ortho Tri Cyclen is hormonal birth control that was prescribed by my OB/GYN mainly to help treat the pain of my gynecological issues. So those are all the prescribed medications I was on and I also took Ibuprofen almost every day for pelvic, back or neck pain. I initially started weaning off of these drugs because my now husband (then boyfriend) and I were discussing getting married and having babies, so I figured it was time to get off of them. I was on the Ativan and Xanax for about 4 years at that dosage and was only on the Elavil for a few months.  I consulted my doctor before decreasing any dosage and went by the tapering schedule that he gave me, which in fact was about 3-4 times faster then I should have been tapering. I was also under the care of a psychologist at the time, who I saw every other week. The tapering schedule I was given was much too fast and it caused a huge amount of physical and mental problems that caused me to become unable to work, caused me to be mostly housebound with the exception of going to doctors appointments and basically caused my life to fall apart. I was almost hospitalized on several occasions and also tried to check myself into in-patient psychiatric care on two occasions. The doctors couldn’t figure out what was causing all the problems, not a single one thought it was from decreasing the medication. Not until I saw a psychiatrist who specialized in these types of medications did we realize what the problem was. It was hell, both for me and my family and it created chronic health issues, as well as causing me to develop fairly severe OCD and PTSD, which I still suffer from and are being treated today. I stopped taking the Elavil without tapering it because it was a low dose without any problems. Then about a month later my doctors wanted me back on it so I started it again, but it caused the “on a boat” sensation, which it also initially had in the past but would go away in 1-2 weeks, and after 1 week I stopped taking it because I couldn’t take that side effect. That feeling diminished after I stopped taking it but I can’t tell you if it completely went away because I had so many other things going on physically and mentally during this time.

I can’t tell you when the vestibular disorder actually started, it was sometime between December 2014-January 2015 and the first time I went to see a doctor about it was March of 2015. My current diagnosis is Cervicogenic Vertigo but if you look up that diagnosis, it’s not the best description of my symptoms. The best way I can describe my symptoms to you is that I always feel like I am moving. If you have ever been on a cruise or even on a boat all day and then get back on land, but still feel like you are on the boat, that is how I have felt constantly, 24/7 since it began 2.5 years ago. If you read the description of Mal De Debarquement Syndrome here, it gives you an excellent description of my symptoms. I had not been on any boats, trains of planes for quite a while before this started and wasn’t in the car for an extended period of time either. Ironically, if you read the description of the drugs used to treat Mal De Debarquement Syndrome (benzodiazepines and Elavil), they are the drugs I either stopped or was weaning off of when it started. Yet no one I have seen seems to have any experience with the effects of coming off of these drugs. Benzodiazepines are also vestibular suppressants and are frequently given to people with vestibular disorders, so to me it made sense that coming off of one might cause this problem. When these symptoms started, I was on about .75-1mg of Ativan and .25mg of Xanax a day. I had also previously stopped taking the Ortho Tri Cyclen, Percocet and Ibuprofen.

I know that was a lot of information, I was trying to include everything I could think of. I initially went to a GP about the problem, who sent me to an ENT. The ENT did some standard testing in the office, asked me questions about my symptoms, etc. As soon as he heard the word “anxiety” he immediately stopped his exam and told me I needed CBT (cognitive behavioral therapy) because it was just my anxiety. At that point, I had been going to therapy for several years with a therapist who specialized in CBT and I had never once complained about anything regarding my balance. So that kind of discouraged me, so I didn’t see another doctor for a while. In the fall, I saw another GP who sent me to vestibular physical therapy, which did help for a while and I learned that I had a fairly significant head tilt. After 4 months, I plateaued and although it had helped improve my symptoms a bit, they were still constantly present, so we stopped PT. Then about 4-5 months later, the problem was still there so I went to my spinal doctor, who then sent me to my neurologist. My neurologist did a head MRI, which was normal and then sent me to the Balance Center at Spectrum Health in Grand Rapids. They did the an evaluation, told me I needed PT, but couldn’t really give me a diagnosis. I couldn’t drive to Grand Rapids twice a week so I did some research and found a physical therapist who seemed to be the best and most accredited with vestibular therapy and started seeing her. Again, we had some improvement but plateaued and my symptoms never completely went away. Every time I have improvement for a few weeks, then sometime will agitate it (sometimes its things like allergies, other times I can’t pinpoint what caused it) and it will get worse again. I stopped physical therapy about a month ago because although it helps with my neck pain, it wasn’t helping my vestibular symptoms and was $80 a week. I have also seen two different chiropractors. One, I have been seeing on and off since I was in a car accident when I was 16 and he uses a more gentle approach with an activator and although it helps my neck and back, it hasn’t helped the vestibular symptoms. The other chiropractor I saw used traditional manual adjustments, which didn’t help the vestibular symptoms and actually made them worse when my neck was manually adjusted a certain way, so I stopped going. I haven’t had an adjustment in a while, mainly because our insurance doesn’t cover it but in the future when I go I will be going to my chiropractor who uses the activator.

Currently, the only medication I take is .25mg of Klonopin daily. When I got down to .25mg of Ativan and was still having a lot of side effects, we transferred over to .25mg of Klonopin, which then went up to .50mg for a year and is now back down to .25mg. I am planning on discontinuing taking it daily and just taking it when I need to, but I am very, very slowly going to decrease that last .25mg and I don’t have a set date to do it. My midwife and doctor would like me on the lowest possible dose or taking it just as needed before I get pregnant. I still have a hope that when I stop taking it every day, the vestibular disorder will resolve itself. There were 2 times that it stopped for 1-2 weeks; once was in February of 2015 when I stopped decreasing the dosage of my medications for 6 weeks to give myself a break. It stopped for 2 weeks and the 1 week after I decreased the Ativan, it started again. It stopped again for 1 week in August of 2015, when I switched from Ativan to Klonopin. We overlapped the drugs when I transitioned to Klonopin (Ativan has a short half life and Klonopin has a much longer half life), so for a few days I was taking both drugs, then decreased the Ativan while increasing the Klonopin. The vestibular symptoms stopped for about 1 week and exactly 1 week after I stopped the Ativan completely, they started again. Otherwise, it has been constant, 24/7 for 2.5 years. Just like in the description of MDDS I linked above, I notice it more when I am sitting still and don’t notice as much when I am moving. Walking outside seems to have helped, so I walk a few miles almost every day. Being tired or when my allergies are bad seems to make it worse, as well as riding on boats, even for very short times. Otherwise, I haven’t noticed anything that makes it better or worse.

I am also going to give a quick history of my physical and mental disorders and current medications. My head MRI was clear and all of my blood work is normal. I do tend to have low vitamin D but as long as I take 4,000 ius a day and get as much sun as possible in the warmer months it stays in the 30s. My vitamin B12 is labeled as high but my GP stats she thinks that is from my vegetarian diet because I eat a lot of beans and nuts. And it has been in the high range since 2012. All my other blood work is normal and as of April, I don’t have any anemia. I take a general multivitamin every day, my weight is in the normal range, I work out & lift weights 3-5 days a week and eat a lacto-vegetarian diet (no eggs or meat, but I eat some dairy, mainly cheese). I have had IBS since I was about 18 and at the current moment is mainly includes heartburn, cramps, pain and gas and has been pretty well controlled with a vegetarian diet. I don’t drink alcohol and although I did smoke cigarettes for 10 years (I know) I quit in February 2016 and haven’t had any since. I have been diagnosed and suffer from Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, Obsessive Compulsive Disorder, PTSD (medical) and depression. However, I have had anxiety and panic disorder since I was 19 and I never had any balance symptoms. The OCD was diagnosed in my mid-20s but wasn’t severe until everything happened with the medications and I was diagnosed with PTSD in the winter of 2015. I have suffered from varying degrees of depression since my teenage years, but it has always been labeled as depression and not the more severe clinical depression. My depression tends to flare when my anxiety disorders or chronic health problems flare. I do have a bulging disc between C3-C4 with bilateral neuroforaminal narrowing & radiculopathy, left foraminal disc-osteophyte complex (bone spur) between C7-T1 with moderate neural foraminal narrowing and mild scoliosis in my thoracic spine. I have had neck and back pain since 2012 when I was in a car accident and it got worse as I spent years working on my feet bartending through college. I haven’t had an MRI on my neck or back since 2013 because my symptoms haven’t changed much. I don’t think my gynecological problems (mild endometriosis, several cervical and abdominal surgeries, pelvic congestion syndrome, etc. is relevant so I am not going to explain all that in detail).

I know that is a great deal of information. I wanted to write a blog post with all the relevant information I could think of and share it in the hopes that someone might possibly have had the same experience or something similar. My husband and I are really hoping to try to get pregnant by early 2018 and I would really like to at least have some improvement to my vestibular disorder, if not complete recovery as it significantly impacts the things I can do, increases anxiety in a lot of situations and I am not sure how pregnancy will effect it. However, I am 32 with a history of cervical cancer and other reproductive issues and my doctors have been pushing for years to have children before I have any more problems. So if you have any experience in this area, please comment or email me. Please share this post as I would love it to reach as many people as possible and I am really hoping that someone might have some suggestions or may have had a similar experience. I always appreciate prayers for healing and recovering as well.

Conclusion: The disequilibrium has been going on for about 2.5 years, constantly 24/7 a week. The only things that seem to make it worse are laying down, sitting still, closing my eyes, when my allergies are really bad and riding on a boat. Movement such as walking outside seems to a help very slightly.  I have seen 2 physical therapists, 2 GPs, 1 ENT, 2 chiropractors, 1 spinal doctor & 1 neurologist. I have also been seen and evaluated at the Balance Center at Spectrum Health in Grand Rapids. All the other specialists and doctors I have seen are in Kalamazoo. I currently take .25mg of Klonopin a day, a multivitamin & 4,000 iu of Vitamin D a day.

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