Different OTC for neuropathy

Hi @jenniferhunter, thank you for the information. Sounds like you went through a lot before finding the right care. Glad you did research to help yourself. It has paid off. Keep trying to regain your muscle loss. I also try to keep active although it is difficult to do with balance issues. It feels like motion sickness with which I get the nausea and sometimes vomiting. I do things often with breaks in between. Good luck!

@avmcbellar Thank you. I did go through a lot and I was caring for my elderly disabled parents at the time I was looking for medical help for myself. I have a biology background and was able to understand the medical literature I was researching. I also went through some vertigo episodes prior to spine surgery that happened when muscle spasms were moving my vertebrae around in my neck. C1 and C2 would often twist or tilt which was enough to set it off. It happened when I looked up at birds migrating overhead because the back of my skull was jammed into the top of my spine that was out of alignment, and when I leveled my head, the dizziness didn't stop. I was seeing a physical therapist who worked on the muscle spasms and gently realigned the vertebrae and that stopped the vertigo. A cause of that can be a physical problem where the mis- alignment of the vertebrae can alter the arterial blood flow to the brain in certain positions. An example of this is bow hunter's syndrome where the rotation of the upper vertebrae interfere with blood flow to the brain. I don't have a diagnosis of that, but if I sleep wrong or lay on my stomach with my head turned to the side, I can cause muscle spasms that start rotating C1 and C2 which causes muscular head aches. I had spine surgery at Mayo which resolved a lot of that and I don't have dizziness anymore. I mention this in case you might have a physical cervical spine issue contributing to dizziness. When I looked at the birds, it literally looked like the world was spinning and it was easier to close my eyes, and a few times I would hold onto the walls while walking if I felt dizzy. It would be difficult to live with that all the time. Perhaps you have consulted with doctors, but if there is a physical cause for your "motion sickness", maybe physical therapy could help. You may want to have MRI imaging of your cervical spine to check it out. I do know that dizziness and vertigo are symptoms in medical literature of a cervical spine problem. Here is an abstract that describes it. https://www.ncbi.nlm.nih.gov/pubmed/17128668

@jenniferhunter I am glad you can concentrate on less health issues after resolving your dizziness. Vertigo is difficult to deal with especially in enjoying activities of daily life. I walk like a drunk person. Thank you for sharing your medical experience. With PT did you request vestibular therapy? I get headaches as well. I did have surgery to correct my ruptured AVM (Arteriovenous malformation). I feel the tension at the base of my skull where I had the brain surgery. My neck muscles do hurt at times. I do not know if C1 or C2 are involved. I can always ask the surgeon or my PCP. For 3 years now, since my surgery, I have had the dizziness. The rupture occurred at the cerebellum where my balance is affected. The dizziness has been the same although slowly I have learned to walk again. I can now use a cane. For long distances, I use a walker. I am very careful not to fall. I need more practice on unleveled surfaces like the lawn. I plan to utilize PT home care when it gets cooler in Florida to be outside. Thank you for the insight. I will keep that in mind to ask the medical experts more questions. In the past any questions I asked, the answers came with uncertainty.

@avmcbellar Wow, I didn't know your story. Can I ask what the symptoms were when your AVM ruptured? I also wonder if your surgery could cause scar tissue that may be problematic and cause dizziness by affecting other things. I think they can do some arterial studies and see if anything is kinked. Did your doctor think the post surgery brain could be the source of the dizziness? You can ask about having an evaluation of the circulation to the brain. Does anything change it, like a different head or neck position or by turning your head? There is a lot of literature about insufficiency of circulation to the brain that is positional in spine injury patients. My gut feeling is the tension at the base of your skull may be putting pressure on the area and there would be surgical scar tissue there that would tighten everything up. Do you have another issue that causes compression like Thoracic Outlet Syndrome? I have that, and by turning my head, it does stop my pulse in my neck. That was one of the tests to evaluate it when I came to Mayo before my spine surgery. I didn't have vestibular therapy. My issue seemed to be physical and mechanical and by realigning my spine so the bones were back where they belonged, it temporarily fixed it until another muscle spasm started moving things again. I have a slight bit of movement or slipping between vertebrae when I change my neck position between flexed or arched, and something like that can be part of the equation for dizziness. The muscle spasms pulled it out of alignment and caused the problem. I haven't had any issues since my surgery and my neck is pretty happy unless I do something to aggravate it. I am working on TOS in physical therapy now and doing myofascial work. I wonder if myofascial release could help you, but I think that would need to be cleared by your surgeon first. It can help stretch out tight tissue and get fluids circulating again and relieve pain. The dura that covers the brain and spinal cord is also fascia which could be pulled on by surgical scar tissue in the fascia. Here is our discussion about MFR. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I hope you find something that can bring improvement.

Hi @jenniferhunter. I didn’t have any symptoms prior to the rupture. At the time, I felt something was wrong as I lowered myself to the floor to vomit. I later passed out. I woke up in ICU at a Tampa hospital after being in a coma. I was told I wasn’t expected to survive. I had no definite answers so I didn’t know what to expect. I had to have additional surgeries to correct the AVM. Luckily the 2 involved going in through the groin, no incision. My last repair in January 2017 left me with the neuropathy on my left side of my body. From my very first surgical repair, I felt my neck in the back being tight at the base of my scull. In time it became less tight as it healed. My neck muscles did hurt and feel tight and still do with less intensity. I had a cerebral angiogram in the fall 2017, recommended by the neirosurgeon. The results proved there was no reoccurrence of an AVM. I did not need to get authorization from my neurologist to take any OTC medications or supplements. Although I was told I no longer had an AVM, I am dealing with the after effects. There has been some progress like with the walking but I still am feeling dizzy no matter where I move my head. I still have the neuropathy, headaches, and double vision. Eliminating the motion sickness would allow me to take part in activities again. I no longer see the neurosurgeon regarding the AVM. I now do have a PCP for general exams. I don’t think anyone wants to deal with my symptoms. Other than the symptoms of a ruptured AVM I am healthy. Prior to this I had annual exams and was not on any medications. My physicians had no alarm for any concerns since I ate healthy and followed an exercise program. After my hospital stay, I was briefly on Keppra until I got it discontinued. My neurologist had agreed with me so I was never on any medication again since then. The neurosurgeon had no answers for me because I was told that not enough people survive to collect any data. I have stopped with the questions and feel that I need to figure things out by trial and error. I appreciate the emails. It has given me an insight to ask my PCP in Tampa questions. I don’t think he knows either but I will try.

Jennifer, your posts are always so thorough and informative, thank you for taking the time. Sounds like we are both in the Tampa area. Could you recommend a neurologist? I fired mine after he prescribed a super high dose of B vitamins which made my neuropathy worse since I wasn’t deficient in them. And who do you see for MFR? I found a few via your link but prefer to start with the one you find competent. Thanks again.

Thomas Pearson, Palm Harbor is an excellent neurologist.

@wisfloj Thanks for comments. I've learned a lot advocating for myself and my parents, and also from my physical therapist who does a lot of myofascial release which has helped me. I have a biology degree and worked in biological research at a university, and I read medical literature about health issues which has helped me advocate for myself and find the surgeon at Mayo who changed my life. Unfortunately, I'm not in Florida. If I was, I'd probably go to Mayo in Jacksonville for something complex. It would involve some travel time for sure. Mayo also has an outreach with other hospitals so their specialists can directly consult Mayo specialists, so maybe you can find a specialist with that connection if Jacksonville is too far to go. My experience with Mayo as a patient was in Rochester which is a 5 hour drive for me as I'm in northern IL, and I was impressed with the quality of my care. This map shows other hospital systems in the Mayo Clinic Care network and there are a few in Florida. https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Sometimes you can find a good physical therapist when you see a specialist. That's how I found my physical therapist from a recommendation through the doctor I saw for thoracic outlet syndrome, and it was a specific employee at that place who had the most expertise and helped me the most which I realized by my results after her sessions. She ended up opening her own clinic in IL and taught me a lot about MFR. I have been a patient there a long time. You can also call Therapy on the Rocks in Sedona and ask for names of MFR therapists who have trained there in expert level courses. They would be more experienced. Good for you for firing a doctor who isn't really paying attention. I have done that too and that was all before I came to Mayo as a patient. I try to help other patients because I know how hard my own journey was to find excellent care.

I have a apt next week for a medical massage and get the myfascial release... I have had pt many times with dr. referral and no one has ever done any type of massage on me..I was wondering do you go often??.. Will I tell any difference with this one time?? It's sort of expensive but I am praying it helps in some ways.

@peggyn, Good afternoon. I will try to answer your questions succinctly. First.....a question for you. How do you know you are getting MFR? Did you request it or was it recommended by the massage therapist? Assuming that you chose MFR, I think the first thing that will happen is a discussion of your presenting problem and your expectations of the massage (MFR) treatment. You may be asked to walk up and down the corridor or to sit down, then rise and stand.

MFR therapists are keenly aware of body alignment problems that can result in painful restrictions and areas of compression within the fascia tissue. The MFR therapist can feel what is under the skin.....to verify the location in need of treatment. With the diagnosis of Small Fiber Neuropathy (SFM) my need became greater. I now go every week to ensure that I don't lose all of the improvement that has been achieved. Your therapist will also teach you what to do at home, how often to do it and will introduce you to any props like a cervical collar or foot massagers that may be of surprising help when you are on your own. Sometimes an area is so restricted and compressed that removal of one layer leads to another. Remember that the fascia is supposed to glide over our organs, hold them snug and release them when they need to be used. In fact, it is the fascia that gives our bodies their shape.

I must admit that I cannot remember how much I felt the very first time. I think she worked on my knee and it was great for a couple of days until the fascia became restricted again. The end result is that I am walking again...a mile or so a day. I had given that up 3 years ago. I am sleeping better and more soundly. We do a body check when I arrive so that there is a therapy plan for the session. We also review and revise the plan for in-home self-treatment.

Sometimes we talk about changes that might have taken place or new restrictions that have been felt and identified.........because I slept on my neck wrong, or I was forgetting to use my lumbar pillow while sitting or I wasn't checking my body alignment before doing yoga exercises and stretches.

And like you, with all of my PT, I was never introduced to this treatment modality. Check-in with me after your treatment. I am anxious to hear. The other person with a great understanding of MFR and solid feedback will be @jenniferhunter. Be free of suffering today and tonight and even tomorrow.....my best, Chris