Anyone Else Taking Neurofeedback Treatments?

[Jeannika]

About a year ago I was placed on Ativan to help keep the worst of my panic symptoms (muscle spasm, uncontrollable fear, migraines, panic attacks, etc.,) under control. It helps a lot. When I reduced my dose a couple of months ago I learned the withdrawal symptoms are horrible ... so I'm sorta stuck taking it for now. My doctor suggested I start taking yoga during the summer to help with my POTS, panic and fear spells. I feel calm and peaceful after doing yoga, and stronger physically. Interestingly yoga has helped with my mobility (I use a cane or walker) and I'm getting around better these days (without pain).

I've been reading a lot about the use of Neurofeedback to treat PTSD and Fibromyalgia (two things I'm also dealing with). I also read how various drug rehabilitation centers are using it to help people get off various drugs and medications. So I decided to try Neurofeedback to see if my brain can be retrained.

The first couple of treatments were amazing. My panic symptoms and migraines stoped, vision improved and I felt better. The only negative thing was, that I've become hypoglycemic again. (It's been years since I struggled with low blood sugar) During my last treatment my panic returned. I'm told this and other negative symptoms sometimes occur, but go away during treatment.

Both my yoga and neurofeedback treatments are on hold until the first of next month. (I guess a lot of things stop during the holidays) Neurofeedback treatments resume on the 3rd (next monday) and I'll be resuming yoga as soon as I can. Hopefully the combination will help reduce my dysautonoma symptoms.

I was curious how Dysautonomia affects other group members, and what they do to cope. Also, I was wondering if stress triggers and/or worsens your symptoms?

[Sarah4444]

Hi Jeannika - Stress is one of my worst enemies, and I find that meditation helps me. Long ago (before I had labels for what is wrong) I read Jon Kabat-Zinn's book "Full Catastrophe Living" and started using some of the techniques he recommends. I think there is a huge overlap between anxiety/PTSD symptoms and dysautonomia as well as MCAD. I have found I have learned to "manage" my emotions because I am super-sensitive and feeling stress makes my physical symptoms worse. In times of trauma or stress so great that it cannot be managed, my health has deteriorated. I am finding the process of being diagnosed very interesting, because it is giving me logical, physical explanations for many things I have felt for years - for instance, on my TTT after being tilted for 10 min my adrenaline levels were 26 times the upper level of normal - no wonder I have trouble sleeping, feeling wired, etc.

I tend to minimize the psychological impact of my medical condition because I am just starting to find doctors who understand and believe what I am saying when I describe my symptoms, and I am afraid of being labeled with a mental illness and dismissed. I think this is a shame, but stigmas are still very strong, and there is also a strong impulse to "blame the patient" when doctors don't understand what is going on. That being said, I hope this changes, because we are an interesting population from a neurotransmitter standpoint, and I think studying us might give some interesting insight into some other disorders.

[Sallysblooms]

I have an integrative physician and she is knowledgeable about all kinds of treatments and supplements. I do not take any prescriptions except for my high bp due to my POTS. Supplements work best for me on everything.

My seratonin dropped low from being so ill so she suggested 5HTP and SAMe. They are wonderful. My seratonin is now higher. Now stress from noise, light, etc do not affect me much. It was awful before I started those supplements.

I take many wonderful supplements to keep my body healthy and help my symptoms. This time last year, I was not able to walk, so dizzy, lightheaded, nauseated, and I could not hear any sounds without feeling horrible. Now I am walking and doing very well. For long walking trips to a store, I use a w.chair or cane seat.

I can even help my hubby do a little housework now. I did two loads of laundry yesterday! We still have someone clean our house and do gardening since he is very busy at work. He does all of the cooking and I hope to keep getting better and help more and more.

My two doctors guide me with my supplements. I am on a schedule three times a day with the supplements. I get blood testing every 6 months. I have seen wonderful improvement. It also shows on my tests! I just tracked three tests and wrote them down. My seratonin and Vit D levels are way up. They were AWFUL this time last year.

I do exercise carefully. I use exer. bands, and I do other things. I also have a pilates machine and eliptical machine. I will do that a bit later. Anything we can find that works is wonderful!

One valuable thing I do also is take supplements for my immune system. I have CFS and POTS so I have to stay well.

You asked about stress, as I mentioned, 5HTP and SAMe have been great. I take Carniclear (l carnetine, liquid) and that helps too as well as Adrecor and other things. They all work together. Now I am so much better and I look forward to the New Year, getting every more healthy.

I am glad you are doing better! I hope we all have a good, healing 2011!

[Chaos]

I'm a huge fan of yoga. I started doing it in 1995 and have found it to be very beneficial for MANY things. I think it helped me deal with a lot of my symptoms over the years- before I knew what I had. I also used a lot of supplements as mentioned above.

Having said that, the day that I got " really sick" in July 2009, I taught a yoga class in the morning and took a 2 hour class that evening. By the time I drove home, I could barely get out of the car and make it in the house. That was the beginning of my health crashing to the point where I was unable to work for 9 months and finally got diagnosed with the dysautonomia etc. As much as I love my yoga practice, it certainly hasn't been the cure all for me. In fact for many many months, doing it at all (even a restorative practice) would send me back to bed for days. Using the supplements didn't help at that point unfortunately. For me, once I got a bit more stable with the meds, I was able to tolerate the yoga better.

When I've gone back and looked at Iyengar's description of the various yoga poses, it always amazes me that so many of the poses are thought to directly affect the autonomic nervous system. Seems like it makes sense that yoga is so helpful for those of us with these issues. I'm finding that I have to treat it almost like a drug though and use it very judiciously as it can have side effects I wasn't expecting. For me it's the same with bodywork,etc. My body has had strange reactions to as many "natural" treatments(supplements,acupuncture, massage, cranio-sacral,visceral manipulation) as it's had with pharmaceuticals. Guess my body's just an "equal opportunity" reactor.

[sandymbme]

I don't do neurofeedback or yoga, but I have just started seeing an acupuncturist. I have had two sessions, and I find it very helpful in dealing with my nausea, but have not gotten a lot more than that out of it thus far. My primary doc has me on several supplements to help with my GI symptoms, as I am so often intolerant of many meds she tries to limit prescriptions as much as possible. The supplements have led to some improvement, but I am currently going through the worst period I have even experienced with my health, so it is sadly just a drop in the bucket at the moment!

Sandy

[hilbiligrl]

Jeannika~ i just looked up the neurofeedback..... im very curious (as, im in the same boat as Chaos.... ive tried meditation, positive thinking meditation, deep breathing... yet nothing works for me).... Can you briefly explain what one of these sessions is like? Do they require any part of the head to be shaved? (cuz i saw pics of the wires attached to a guy's shaved head on widipedia... lol) I seem to only respond well to klonopin and nothing else. Stress is a killer for me.... 2 years of intense, constant, severe stress in every single area of life, school, work, family, hubby, kids and their school problems, plus health.... put me in a downward spiral for about a year and half now. I am tough and strong willed, but apparently my body isn't... ugh.

But im very interested as to what a session is like.....

much thanks

hilbiligrl

[firewatcher]

Jeannika~ i just looked up the neurofeedback..... im very curious (as, im in the same boat as Chaos.... ive tried meditation, positive thinking meditation, deep breathing... yet nothing works for me).... Can you briefly explain what one of these sessions is like? Do they require any part of the head to be shaved? (cuz i saw pics of the wires attached to a guy's shaved head on widipedia... lol) I seem to only respond well to klonopin and nothing else. Stress is a killer for me.... 2 years of intense, constant, severe stress in every single area of life, school, work, family, hubby, kids and their school problems, plus health.... put me in a downward spiral for about a year and half now. I am tough and strong willed, but apparently my body isn't... ugh.

But im very interested as to what a session is like.....

much thanks

hilbiligrl

My son is going through neurofeedback sessions for ADD right now. The first session was "brain mapping" where they put a tight cap with electrodes on your head, squirt goo and put electrodes in a bunch of holes and have you sit with eyes shut and open and measure all kinds of brain waves. Each session, my son has 6-8 electrodes "gelled" to his scalp (they pull back the hair to get to the skin--short hair helps, but you don't need to cut yours to do these.) Each session lasts about 45 minutes and the tech has him concentrate on either lowering certain brain waves through relaxation and breathing or raise others with concentration and games. It is really guided self-awareness training. He's had 12 sessions so far and I can see very small improvements in his impulsive behavior, but nothing huge.

One thing that has me a little worried is that his "brain map" shows typical Generalized Anxiety Disorder patterns, but he does not have GAD or its symptoms. His doctor says this could be a sign of increased sympathetic nervous system activity, possibly a neural predisposition for POTS---so we are watching for ANY symptoms...puberty is coming up fast!

[hilbiligrl]

firewatcher ~

thanks for the info! I was a little worried about any testing that might require some hair shaving and my hair is thick and to my waist and a very huge part of who i am (i know, sounds silly, but it is This actually sounds pretty neat and something i will inquire about as i start my journey with testing, etc here next week and next month. I have basically had GAD all my life, but never really diagnosed with it cuz i refused meds most my life. Can this test show what is happening in the brain activity during severe episodes i wonder? I'd like to physically see what the brain activity is when im having a severe episode, as my severe ones are almost like a long term seizure with full body paralysis (and many other symptoms to boot).

hilbiligrl