Raisin Posted March 9, 2014 Report Share Posted March 9, 2014 I can't figure this one out. Maybe someone will have some input? I definitely have ataxia but this occurs after I have been walking fairly normally for a bit ie. the mall. I actually made a video of this with a friend of mine to prove to my neurologist that this is NOT anxiety. I can make it to about two stores or so and then my legs start getting very clumsy. My left foot actually swings out and then back in like a foot drop. Both feet sort of slap the ground kind of like a horse walks. Lol I use a cane most all of the time now. Can anyone relate or perhaps even know what this is? I dont know if it is neurological or vascular? Help please! Quote Link to comment Share on other sites More sharing options...
IceLizard Posted March 9, 2014 Report Share Posted March 9, 2014 Sorry I can't give you answers but I have ataxia, too. Sometimes it occurs after I have been walking too long and sometimes it occurs when I am feeling "POTSy" and then try to get up and walk. Sometimes it is so bad that I fall down or have to sit down because my legs won't work. I also have intention tremor. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 10, 2014 Author Report Share Posted March 10, 2014 IceLizard, thank you so much for your help. That is exactly how and when it happens to me too. Do you have hypovolemia as well? I am supposed to start a physical therapy program for Pots Tuesday and I thought I would show it to the physical therapist. Maybe they would have input or they can tell the neurologist. My neurologist said to take more Midodrine but that doesn't help. I took the video to show him because I think he thinks I am just getting tired or anxious. Perhaps a picture is worth a thousand words? Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted March 10, 2014 Report Share Posted March 10, 2014 I was also diagnosed with vestibular ataxia but I still don't have a lot of answers. I actually started a thread about this a few months ago. About 10 months ago I started having a lot of difficulty walking. When I walk it feels like I am walking in sand or the ground is moving. If I walk more than 50 feet I start to get really exhausted. I use a cane anytime I leave the house now and it has made walking much easier with the stability. It helps me maintain my energy as well. I teach at a community college and now drive myself all over campus. I'm still working on finding answers why this suddenly started and what it means. I am also starting physical therapy.My guess is that it is neurological. One doctor has told me he thinks it's unrelated to POTS. I did an EMG and it was normal. I hope you get some answers also and if I get some in the near future I'll post here again. This symptom is absolutely maddening. I never imagined needing a cane at 33. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 10, 2014 Author Report Share Posted March 10, 2014 Yes UnderwaterThing....I can relate. When I use the cane, I feel less "spacially disoriented" if that makes sense. I keep thinking my Pots is more of a symptom of something else but I have been tested in all kinds of ways for so many things. I do have hypovolemia and major blood pooling. I also have horrible nausea, bladder retention, bowel issues, migraines, neck pain and endometriosis. I guess I am writing in to the forum because I do get scared. I am anxious because I feel misunderstood by the doctors or that they are not understanding that when they say, "I'll see you in three months" , I am back at home nauseated and trying to get through another day without complete answers. I also feel that if I tell the doctor that I am scared, he will just reach out for the "you are probably just anxious" answer. That is not what I need. Sometimes I just sit and cry. Well, I hope the physical therapy helps us. Maybe it can point things out for us. Faith. Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted March 10, 2014 Report Share Posted March 10, 2014 I've read that some ataxia can be caused by Vitamin B12 deficiency. Do you take a B12 supplement of any sort? Is it possible that you are in need of one? I didn't realize it had a term, but I actually get ataxia, too... Especially after the dance classes I take. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 10, 2014 Report Share Posted March 10, 2014 Orthostatic Tremor maybe? This can happen after you have been walking for a few minutes. When my son was able to walk, this would happen to him. It has to do with pressures and the circulation system. Google the term and you will find the information. Some people can keep on walking and it will eventully stop.Ataxia can be caused by many things. Be sure to have your vitamin and mineral levels checkek. Some forms of encephalities can cause this. High levels of Glutamate and Gluten can cause this. There are some old post on gluten ataxia on this forum that are very interesting. I have been researching on line and asking doctors many questions because this has affected my son. My son is wheel chair bound because of the tremors. My son's levels of glutamate on the brain were very high and his GABA levels are very low accroding to a recent test.. One of our doctors told us to try the GABA supplement to see if we could get the tremors to stop. I have my son on a low dosage of GABA and Taurine. He has been on the GABA for 3 weeks and Taurine 2 weeks. At times, I think the tremors may not be happening as often but they have not stopped totally. This is what I am watching for. The GABA and Taurine have not made any of his symptoms worse.I made a post about Taurine (with articles) a couple of weeks ago because of its benefits It does help balance electrolytes. It will also help lower glutamate levels.Another product that I have started using is True Calm. It has a low dosage of GABA and Taurine together. I started using this Saturday night with Tyler and it truely does help with sleep. My oldest son tried it last night and was able to tell a big difference this morning. He said he slept really good and he looks rested and relaxed this morning. Because the True Calm has a lower dosage of GABA and Taurine, I am going to try using it during the day time to see if it will help with Tyler's tremors. I'm hopeing it will not make him too relaxed and sleepy. I'll post later this week about this experience. Quote Link to comment Share on other sites More sharing options...
jaddico Posted March 10, 2014 Report Share Posted March 10, 2014 Yes I can relate. I also have ataxia which worsen with increase walking. I'm using a cane now and going to PT. My gait has worsening over course of time. I was the only one who notice it initially. I thought I was losing my mind until I went to a zumba fitness class then it became apparent to every one and has not resolved since. It comes and goes (in severity) and can initially make a "liar " out of you because my first neurologist didn't notice it with multiple complaints by me.He will be surprised to see me now. I also have balance issues also.I have a diagnosis of proximal myopathy ( since Nov 2013, cause??? going through extensive work up $$$$$$)and right hemiparesis. A good neurologist will do functional testing for our muscle strength to determine if muscle weakness as the cause of your ataxia. I have history of small fiber neuropathy and will start treatment for Myasthenia Gravis soon after an eye exam this week. its been horrible for me. The leg started with the gait abnormality but now with some spasticity especially with exertion. Good luck and best wishes. Please keep us posted Quote Link to comment Share on other sites More sharing options...
IceLizard Posted March 10, 2014 Report Share Posted March 10, 2014 My tremors sometimes escalate into convulsions and I am on 5 mg of Librium (a long-acting Benzodiazapine which also works on GABA) which does help quite a bit, but I don't want to be on it long-term.I am wondering if I also have a GABA issue because of the way I reacted to Gabapentin. I was put on it for migraines, but it made me so sleepy that I tried to come off of it. That caused intention and orthostatic tremors which quickly became convulsions that would NOT stop. I was put into the hospital and given IV Ativan to calm the convulsions.I think I may try weaning off the Librium when the time comes with GABA...Informative Article: A Biochemist's Experience with GABA: http://www.phyllisbronsonphd.com/Graphics/BronsonGABA.pdfThank you looneymom for your information on GABA Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 10, 2014 Report Share Posted March 10, 2014 Thanks for posting the article on GABA. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted March 10, 2014 Report Share Posted March 10, 2014 @Raisin I do not know if I have hypovolemia, but I am on Florinef and do not do well off of it. Taking more Florinef does not help with the tremors/ataxia, Benzodiazapines do help. I hope you can find some answers!@looneymom You're welcome and I hope Tyler gets to feeling better. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 10, 2014 Author Report Share Posted March 10, 2014 Wow! So much info! Thank you! I have cut way down on anything with gluten and have not seen a difference but it may be something that needs to be cleansed completely. I was tested for gluten intolerance and that was negative but I know some folks can fly under the radar. I did have low vit D and have been taking prescription Vit D ever since and my levels are now in normal range. I had a skin biopsy recently which was normal so no small fiber neuropathy. They ordered this after my TST test showed anhidrosis in all my limbs and hypohidrosis in the central spots. They then ran a neoplastic panel which showed nothing and tested for AChr antibodies which was also negative. Maybe we should all be looking out for those alpha A and Alpha B antibodies like it has been posted lately? GABA is very interesting and I am willing to explore it further for sure. I don't know if I may have too much of it or too little? I do take a very small doseage of Neurontin for restless leg syndrome and I don't sleep without it. Literally. Which may point, actually, to a GABA problem. It is so confusing, isn't it? LoonyMom, it sounds like you are testing everything and that is so cool! I am going to go Google crazy! LolGod Bless us All. We will get through this. Together! Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 11, 2014 Report Share Posted March 11, 2014 RaisinBTW do you happen to have daily headaches? The reason I'm asking there is something called non-neoplastic limbic encephalities. My son has a daily headache with the tremors. A doctor has told me that I need to have him checked for this. This is a slow progressive type of encephalities. Just thought I would mention this to you. Plenty of information online. Happy googling. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 11, 2014 Author Report Share Posted March 11, 2014 Looneymom, I often get headaches but I have had migraines since I was a teen. They went from the horrible head falling off pain to no headache but ocular migraines whereby I only see half of things. Then, I was hospitalized with what they thought was a stroke but decided it was a migraine (no headache). At that time, I had left sided weakness (I just realized that is when my left foot first started flopping out to the side), slurred speech and horrible nausea. That lasted for three days and I couldn't even get to the bathroom by myself because my left leg wouldn't support me or land where my brain was trying to tell it where to go. I had three doctors in the hospital say, " you're complicated" and seemed to just give up and almost run out of the room. Sigh. I will google non neoplastic limbic encephalaties! IceLizard, I am on Midodrine and Topral but maybe I shall attempt Florinef instead. From my understanding, it is supposed to help increase blood volume. Maybe that is why they put you on that? My ataxia also seems progressive. Slowly progressive but progressive nonetheless. I am sorry to hear about the convulsions you are experiencing. There has to be an answer. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 11, 2014 Report Share Posted March 11, 2014 RaisinHere are some articles to look at. I did this research because of some things that showed up in my son's test results. He will be seeing the doctor in 2 weeks and I am pressing the doctor to run the blood test. Hope this helps.http://www.jni-journ...0179-3/fulltexthttp://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03252.x/fullhttp://jcn.sagepub.com/content/early/2013/10/02/0883073813500527.abstract Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 12, 2014 Author Report Share Posted March 12, 2014 Thank you so much! Interestingly, I had a stress test today and did quite excellent. I was walking at a very fast pace and my legs kept working! I mentioned it to the doctor afterward and told him how that seems so incongruent with having trouble with my legs while going for a simple walk. He said it actually did make sense because the treadmill is telling your legs to go as if that is the brain of the leg movements. If we are walking normally, our brains are telling them to go. Ergo, my brain has a disconnect somewhere. My friends have told me that for years....hahahaha! He said Parkinson's patients also do quite well on a treadmill. Quote Link to comment Share on other sites More sharing options...
corina Posted March 12, 2014 Report Share Posted March 12, 2014 Raisin, that's exactly my experience, I can walk on the treadmill (while holding myself) and feel that my legs "know" what to do. When I come off (after resting for at least 10 minutes) it seems my legs don't know what to do, where to go and how to put my feet. For me it also seems related to being tired, I enter the gym in great spirits walking okay-ish (normal for me, not for others), then after biking I get in trouble and walking from one place to another I have a lot of trouble and walk like drunk. Quote Link to comment Share on other sites More sharing options...
targs66 Posted March 12, 2014 Report Share Posted March 12, 2014 I can so relate! After just a few minutes of any kind of exertion that raises my heart rate, my muscles stop working and I'm stumbling and woozy like I ran a marathon.I never know whether to attribute that to some sort of neurological problem, or just my weird blood pressure issues (I have neurally mediated hypotension, not POTS). I had an exercise stress test last year. As the difficulty increased, my heart rate increased as predicted -- but my blood pressure didn't respond. At the point of highest exertion, my blood pressure only got up to 123/80. I could barely stumble the three or four steps from the treadmill to the examining table. I've never been diagnosed with any neurological condition (despite a strong family history of MS), so I've speculated that if my muscles and brain aren't getting the oxygen they need when I exert myself, maybe that's going to manifest itself with ataxia and coordination problems - ? (I haven't ruled out the possibility of neurological issues, but am trying to keep an open mind to both possibilities.) Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 12, 2014 Report Share Posted March 12, 2014 Speaking of treadmills. When Tyler was alble to walk for that short period, the pt put him on a treadmill for a very short time. She had to pull him off because he was walking strangly. She called it a scissor tail walk and said it had to to with signaling to the brain. She never but Tyler back on the treadmill again because she was afraid the brain would keep sending this strange signal when trying to get hm to walk normally. I would not rule out that POTS is not associated with some neurological symptoms. I think it comes with POTS and is seen in many people. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 14, 2014 Author Report Share Posted March 14, 2014 Corina....yes! It is like my brain doesn't know where to put my feet! You put that so perfectly. I also walk like a horse where my feet clomp. Oh my. Loonymom....I looked up all your great articles. I don't think I have any type of encephalitis as I had a brain MRI which showed white matter lesions but not any encephalitis. I would think they would have seen that, right? What is weird also is that it happens when I lay on a hard floor to do a meditation class that I go to. After I get up, same thing. Not after laying in bed though. Weird. Maybe it is a lack of oxygen and/ or blood to the brain. Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted March 15, 2014 Report Share Posted March 15, 2014 Huh. See, I HATED doing the treadmill stress-test, and think I would have done SO much better with the stationary bike. Unfortunately, they didn't have it at the place I was being tested... Ugh. It was the first time I'd ever walked on a treadmill, and I just felt so awkward. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 15, 2014 Author Report Share Posted March 15, 2014 I didn't know you could do a stress test with a stationary bike. Cool. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 15, 2014 Report Share Posted March 15, 2014 Hi Raisin,There are many things that can cause ataxia like gluten, vitamin and mineral defiencies, and viruses. There are some old post on gluten ataxia on this forum that you might want to read. Ataxia can be caused by lyme and it's coinfections. My son had some testing done to check for some viruses in his system. His Mycoplasma P, HHV6, and Paro antibodies were sky high. Even though there is no indiction of active infections, these antibodies are way too high and may be causing problems in his nervous system. Have you been to an immunologist or an infectious disease doctor? They can check for virus and treat these types of problems. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 15, 2014 Author Report Share Posted March 15, 2014 Hi Looneymom, no I haven't been to an immunologist or an infectious disease doctor. My neurologist said he tested me for Lyme but I think he was thinking of someone else. Lol I have had ALOT of tests though. Vit D was low but now ok, skin biopsy (no small fiber neuropathy) , some antibody testing, MRI (not upright MRI though) , TST , qSart, etc. etc. At this point, I think my docs want to rubber stamp me with idiopathic POTS and see me every three months for medication adjustments. I feel differently, though, and I feel there is something else going on. I am wondering if I should just wait until something else (symptom) pops up or until the Ataxia gets so bad that they can't ignore it really anymore. Now that I write that it sounds like a negative attitude on my part but I don't understand how to advocate properly for myself. My hubby isn't able to do this for me either. Hmmmmm Quote Link to comment Share on other sites More sharing options...
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