Balance, high blood pressure medications, and …

Good afternoon @ray666, balance is certainly a critical capability. I have only fallen once on my way to the bathroom in the middle of the night. I have a knee that just buckles and I start to fall. According to my clinicians, that is a nerve issue that arises as part of neuropathy. I have idiopathic small fiber neuropathy (SFN) unrelated to cancer or diabetes.

I have a question. I only take 10 mg of losartan a day. Have you checked the drug side effects for 50 mg a day? And the one more important issue.......when you mix the meds and/or add a new one do you inform your neurologist? Sometimes my clinician will recommend that I run my medication list by my pharmacist as they have a broader range of knowledge about how medications might affect other conditions that you may have to consider.

When are your balance issues most likely to occur? Do you have any warnings? When you change position from lying down to standing do you sit up first and give your body a chance to settle and adjust? If I have recently taken my gabapentin along with my MM, I give it time for any brain fuzziness to disappear before I try to stand.

Tell me about a typical episode so I can perhaps steer you in the right direction to additional helpful members or information.

May you be safe and protected from inner and outer harm.
Chris

Hello, Chris (@artscaping)

Thank you for such a carefully composed reply. To try to answer your questions: My experience is one of wobbliness, not dizziness. Sober now for going on 30 years, I nonetheless remember what dizziness feels like. This isn't that, although I'll admit to having a devil of a time conveying this to doctors, friends, and colleagues. The best I've come up with is the feeling is like being on board a small ship in a rolling sea, not a wild tempest, just a gently rising and falling sea. I feel it most in half- and low-light: pre-dawn, twilight, sometimes in interior lighting. Oftentimes, the sensation is mild, almost negligible; every fourth or fifth day, it will be something requiring more caution in moving about. I have fallen, but so infrequently I think of my falls as related but not of major consequence. My biggest dread is that next fall; going about I have to be super cautious. I kid my friends, telling that that I'm earning a Ph.D. in proprioception! To your other question: Yes, I've informed my neurologist of my two hypertension medications (Losartan 50 mg, and Amlodipine 5 mg), so she knows. I believe I may have mentioned in my post that three nights ago I added (without consulting anyone) a 10 mg Melatonin, one tab each of the first two nights. Then, during those two nights and for several hours the following two mornings, I felt frighteningly wobbly. Both times, though, the wobbliness was gone by lunchtime. Last evening, for the heck of it, I skipped both the Amlodipine and Melatonin (I did take the Losartan this morning) and got through both the night (potty breaks) ad this morning feeling great: zero wobbliness. Tomorrow I plan to tell both my primary doctor and neurologist of my "unauthorized" experiment.

Again, Chris, thank you for your reply. You too: Stay well!
Cheers!
Ray

Speaking only for myself, taking more than 1 mg. of melatonin leaves me feeling drugged the next day. The combination of 1 mg. of melatonin and one Tylenol P.M. usually puts me right to sleep (as long as my feet don't go crazy during the night....).

Good afternoon @ray666. If I am not intruding, how did your appointments go with your PCP and Neurologist? Will you be taking a version of your experiment national? Seriously, what did you learn about medication's impact on your symptoms? Thanks in advance for sharing.

May you have peace and ease.
Chris

Hello @artscaping and @ray666
Please see my reply to @jesfactsmon
under Neuropathy Group discussing how Neuroplasticity helped solve my Ataxia (balance) problems. It led me to walk with a cane to prevent falls and bumping into walls. I started Physical Therapy which was written for Balance & Gait Training. A common factor that I just noticed is that I was also taking Gabapentin at the time.
I still taking a very small dose of 100mg at bedtime but when I had the gait/balance problems I was taking 700-800mg daily.
The PT allowed me to walk without a cane.

Hello @artscaping and @jesfactsmon. I'm sorry, I'm just now seeing your notes. My meeting with the neurology PA went well, in fact, I've met with her twice now and have another meeting in two weeks. My brain MRI showed nothing of concern, and this past Thursday I had a cervical MRI (no results yet). As far as my blood pressure medication goes: since my last message, I've been taking only the Losartan; laying off the Amlodipine. My blood pressure seems to stay within an OK range, regardless of what BP meds I'm taking or not taking. I'll be seeing my primary doc in a few weeks, and I intend to restart the Amlodipine before then, so she and I will have some good stats to go over. // I have a cane, but I've not felt the need to use it, not yet anyway. I keep up with my physical therapy; maybe I too will be able to get about without a cane. Fingers crossed! ––Ray

@ray666, @njh No problem, it is a beautiful day...with a temperature of about 73 degrees. Whew....it has been so hot. I have a cane too, Ray.....a Hurrycane. I use it for longer walks and to simply prevent falling. Thanks for the update. It looks like you are covering the waterfront, so to speak....getting tests for issues that are meaningful, and thinkng through your medication selection and dosages. Please make sure you inform your clinicians about medication changes. If you have access to a patient portal, there is frequently a medication section which lists everything,

I am glad you received the brain MRI. That was an essential test in the early part of my journey. And mine too was reassuring. Do you and your PCP review all of the current items and issues in your medical status? This year that shared decision-making practice yielded a couple of quite successful actions for me. Example: I am tapering off gabapentin very, very slowly. It was time to see what would happen after taking 1200 mg at night for 4 or 5 years. She thought some of my increase in pain this time was due to an increase in anxiety. The bottom line....I am down to 600 mg of gabapentin and have added 30 mg of duloxetine. I am much calmer with the concomitant benefit of eliminating some side effects.

Please add me to your update list after your PCP appointment. You see, I am learning too, thanks to your sharing.
May you be mentally and physically healthy.

Chris

@ray666 @artscaping
I wanted to comment on taking Gabapentin. I took it following Anterior Discectomy in 2006 along with Darvocet (which has been pulled from the market) and Robaxin (muscle relaxer). It was a godsend because I was unable to take Narcotics and NSAIDS. I tolerated it well back then. However, over the years I have had to decrease my dosage more and more to prevent awful side effects. I believe it led to internal tremors that made my body feel like it was vibrating, and it also led to Myoclonus in my face and hands and forearms that would cause me to bat my iPhone out of my hands, and cause one side of my face to twitch continuously. I didn’t realize it was from the Gabapentin for quite awhile until I started reducing my dosage gradually and now I only take 100mg at night to help with neuropathy and sleep. The highest dose I ever took was 700mg a day in 2-3 divided doses. Gabapentin is known to cause bad withdrawal symptoms (do a search and read about it). I will add that I have had worsening Chronic Kidney Disease since 2012, thus the need to reduce my dosage. It certainly helps with neuropathic pain but with a cost. I was unable to tolerate Lyrica. My Neurologist at University of Michigan tried me on Trileptal (anti-seizure Med)
for Neuropathic pain but after taking it for 6 months it caused a rash and itching. He finally gave me Flexeril 5mg twice a day, and it has really helped me control the Neuropathic pain without side effects. It is hard to get a doctor to give you Flexeril for more than a couple weeks (it’s one drug that has been abused by addicts) but I think my U of MI Neurologist giving me a year’s worth helped convince my PCP that he would continue it.

Hello, all!

I’m wondering if any of you have had symptoms progress as mine seem to be. For well over ten years I’ve had worsening balance problems. I’ve said all along: I’m not dizzy! Even at its worst, the room was never going round and round. I’ve always thought my balance trouble was caused by a combination of (1) severe flat feet, (2) bad knees (one is now artificial, the other has lots of arthritis), and (3) hip/pelvic arthritis. Assuming my problem was “structural” and not neurological, I’ve done years of PT, but with little improvement to show for it. I’ve only recently started to see a neurologist. We’ve had only two appointments, with a third coming up. I had a brain MRI: no apparent problems there. Last week I had a cervical MRI: results still pending. What I’ve noticed recently are recurring bouts (maybe once every two or three months) of what might fit the definition of “dizziness.” I’ll have to hold on to walls, countertops, etc., to go safely from here to there. When this is happening, both my legs feel weak; they’ll be achy, and that achiness will still be with me the following day when I’m no longer dizzy. Does any of this sound familiar to anyone?

Ray

@ray666 Hello Ray, and welcome to Connect. I think that you are on the right track working with a neurologist. I am a spine surgery patient, and I did have bouts of vertigo where I had to hold onto the walls and the room was spinning. That was before I had spine surgery. What was happening was that I would get a muscle spasm that twisted or tilted my cervical vertebrae, and when it does that, it stretches the arteries that run through the sides of the neck vertebrae which alters blood flow to the brain, and causes dizziness. I had spinal cord compression because of a collapsed C5/C6 disc and that affected my legs and caused pain. When my vertebrae were shifted it put extra pressure on my spinal cord and made me walk with a limp. This is something that is common with cervical cord compression, and that can sneak up on you even if you are not aware of a spine problem. If you lay down on your back and your neck muscles relax, a physical therapist (or your neurologist) could feel to see if your spinal vertebrae are correctly aligned. Ask your neurololgist to explain what is seen on your MRI. You may need to take that to a spine surgeon for a better reading of the imaging if something is found. Let me know if I can be of further assistance. Does this sound familiar to what you are experiencing? Would you be comfortable sharing the results of your imaging?