Loss of awareness of where your body is in space

Hank, You are so nice to ask me about my current pain. I'm taking Pregabalin 50 mg in Am & Pm, Nortriptyline (pamelor) 50 mg in Am, Rx: Baclofen 5 mg - take 1/2 tablet 2X day as needed for pain, Most of my pain is coming from muscle stiffness in both legs & feet, From 9:00 am - 12:00 pm- Window of time when I go to park & walk, do PT exercises, go home and do stretches on a mat, from 12:00 pm -11:00pm my pain level starts to increase to a 8. My Neurologist Rx: Baclofen (muscle relaxer) but side effect is sedation. Hank, if you were me what would you do to decrease my pain level? You seem to have a lot of experience helping your wife manage her PN.- Thank you 👱‍♀️ interested in your feed back

Hi @lweave2
Two days ago I posted for someone a list of the things my wife is doing in her life to deal with her pain, here is the link to that post:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=204#comment-438794
Some of the things on her list are specific to her primary pain area which is her neuropathic burning feet. Physically it sounds like you are doing plenty, what a great sounding program of walking and PT related exercises. I am impressed.

Linda is allergic to many drugs. She does not tolerate others very well either. She's had some bad reactions to a few different things. So she just says no to drugs at this point. That said, some of the things on her supplement list might help you. Among these I would consider Theracurmin (from the company Integrated Therapeutics) for inflammation. Possibly Milk Thistle to help your liver deal with the toxicity of the drugs you are taking. Also are you taking magnesium (citrate, glycinate or malate)? Could be good for the stiffness. Linda is taking PEA (palmitoylethanolamide) as a possible help for the pain from her PN but she has not yet taken it long enough to know whether it will help her.

She (and I) also take several mitochondria boosting supplements (mitochondria are the source of all energy in the body). Not sure you're interested in those, just tossing it in here. Some of them do seem to boost energy (I can point you to a discussion if interested). Wish I had something more to suggest. Oh, one other thing she is doing is a cold laser light treatment on her feet. The laser, bought on Amazon, is uber expensive, but so far, after 2.5 weeks, she is noticing some changes happening in her feet, possibly for the good. We'll see. Maybe using it on the offending muscles in your legs could benefit you, who knows. If you are interested, here is the item on Amazon: https://smile.amazon.com/LaserTRX-Therapy-Premium-Technology-Combining/dp/B07RGFKBPK/ref=sr_1_1?dchild=1&keywords=laser+trx&sr=8-1

You can also find it discussed on Connect, just search for LaserTRX in the search window.

Hope some of this is helpful for you. Best, Hank

Hank, Thank you so much for all your recommendations. 👱‍♀️

I learned from this group that proprioception is the loss of your surroundings, but I also feel like I have lost the surroundings of my body.
What I mean is when I'm outside walking and if I go up a little hill, I feel disconnected to my heart rate and my breathing. I know I'm breathing and I have a heart rate but I don't feel it. I feel diconnected to my surroundings and my own body. I do have numbness in my feet & legs. Does anybody know what I'm talking about? I have a physical therapy apt tomorrow, and I will ask her about it. This is very over whelming to me. 👱‍♀️ Thank you!

Hello! Yes, Gabapentin can and does often cause balance and other related as well as non-related symptoms. Warm regards, Sunnyflower

Hello. My neurologist told me the other day that when she used the tuning fork on my legs, that I didn't feel the vibrations toward and on my feet which means I have proprioception. She never told me that before!!!! I can't believe it! The Gabapentin is also famous for causing perception issues w/ the space around us and can affect balance, cause lightheadedness and so many more Sxs, some of what you mentioned you go through, which I seem to have all of! It definitely makes the brain numb the pain but I hate the side-effects and I'm only taking 800mg. total in a day. I take them 3 times per day; only two at bedtime. It has a short half-life so should be taken 3 times per day to get max results. I have everything you mentioned except for the disconnect w/ heart rate and breathing.

Hope things improve for you. My heart is heavy reading about your journey. I pray you stay safe and don't fall!!!!! I almost go down several times per day. I use a walker and use walls and counters for support if I don't have my walker like in my small kitchen.

Physical Therapy gave me some balance exercises some time ago. I really can't do them but could try harder. Hope you have success w/ their plan for you.

Warmest wishes, Sunnyflower

Hi Sunny, I’m so sorry you seem to suffer from so many side effects from the gabapentin, some of which I would have to disagree with your saying they are commonly felt. I also don’t think it necessary for everyone to take them 3xday; everyone reacts differently to meds so what works for one may not hold true for someone else. There may be many reasons one may experience brain fog, loss of memory, balance problems, etc. especially if other drugs and other health issues are present. Most side effects get better or disappear ( usually) once the body acclimates to it if there is no allergic reaction. Just my two cents. Helen

@helennicola
Hi Helen, Linda took gabapentin for about 6-8 weeks before her symptoms became so bad she could no longer tolerate them and she had to be gradually weaned off of it.. Her doctor never mentioned that the symptoms might subside at some point if she didn't stop and perhaps if she had kept on with it they would have gotten better but she just could not stand the status quo any longer,. She had a number of symptoms, but the dizziness was the worst. When you are experiencing something that is intolerable beyond question, it's hard to keep it up, regardless of whether they tell you the side effects might get better after a time. Best, Hank

Hi Hank, I totally agree, we do have to make our own decisions regarding what we can and will tolerate; I too developed vertigo and dizziness. The vertigo lasted on and off for about 1 year at which time I was seeing a P/T specialist, the dizziness still comes and goes but is transient and usually brought on by overuse of NSAID’s. Non-THC CBD and xanax. The vertigo has not returned and at the time I did not attribute it to gabapentin but I do think it was the cause. The only reason I take gabapentin is because it helps my pain and allows me to sleep at night, if I could find an alternative I would stop it immediately. Helen

Hi Helen, hope you are doing well. Good to hear from you!

The many, many times I've researched the side-effects of Gabapentin, they are the same; vision problems included. I have almost every one of them and they are absolutely horrible and can result in some harmful things such as balance issues causing falls. They are often referred to as "common". I have been on it for about a year and a half and they continue.

However, it does numb the brain's perception of my and other's unrelenting head to toe intolerable neuropathy pain so I continue to take it but agonize about it daily. In fact, I have titrated my dose higher, a little at a time for better pain coverage. I am taking only 800mg, divided into 3 doses per day, 300mg wake-up, again afternoon and 100mg at bedtime. There are patients who take over 3000 mg/day!

Also, three times a day appears to achieve the most therapeutic frequency bc of it 's short half-life per my Endocrinologist and pharmacists with whom I have discussed this with at great length, several times. My sister has back pain from a disc problem and is fine taking a very low dose at bedtime only. It is not the neuropathy pain I and most people on the neuropathy blog have.

As always, one should take as directed by their doctor, but feel free to tell them if they aren't experiencing the relief they need. I thought I clarified one should talk with their doctor on the post you are responding to but it appears I could have done a better job. I will try to do better at that.

The info I shared has been mine, many patients I know, and what many people here on the blog have shared is their experience with Gabapentin regarding the unwanted side-effects; all common.

And most importantly, what my Neurologist, the pharmacist and both my ophthalmologists and retinal specialist have told me.

Regarding medications, even over the counter, they can affect each person in different ways. One must always be mindful of that and only take as directed!

I hope and pray I didn't lead anyone astray. 😟

Warmest regards, Sunnyflower