Motion sickness dizziness versus lightheadedness???

[dino68]

Hi, I have had dysautonomia for over 20 years (since I was in my early 20s) that started with exposure to chemicals. I had the usual symptoms of hyperadrenergic POTS with catecholamines of over 2000 on standing and heart rate increasing by over 100 within seconds of standing. I also had severe gastroparesis and I ended up with a feeding tube for a few years. I was diagnosed after about 3 years. I was started on clonidine and atenolol and they did help some but I still could not stand for long and then I had low BP and sometimes low HR. I eventually went to see a Chinese herb doc for the gastroparesis when my weight dropped to less than 90 pounds and within 2 days I could eat again. I have no idea what combination of herbs this was, as this herb doc did not speak English and only based his treatment on feeling of my pulse. I stayed on these herbs about 7 months, hoping they would help the rest of my symptoms but they didn’t. At least I could eat. Then over the past several years I have started to have constant motion sickness type dizziness and will even pass out with it while sitting down or lying down over the past year or so. I have had tons of testing. The ENT doc said my right ear was about 35% weaker than my left and I had ear surgery just in case I had a fistula but it did not help. I have had the MRI, MRA and I was told they were normal except for a slightly hypoplastic P1 segments of the posterior cerebral arteries. I was diagnosed as having connective tissue disease by a geneticist even though I had been told before that I did not have this. I also have brachydactyly which is a shortening of the fourth and fifth fingers and the geneticist thought this was probably caused by pseudohypoparathyroidism. I was born with this. I also have osteoporosis, MVP, scoliosis, thoracic outlet syndrome, TMJ and others. I think maybe my vagus nerve is involved with the dizziness and passing out sitting down but the MRI was normal. I tried prednisone and within 2 days was having a full vertigo attack. I have been told I have mal de debarquement syndrome but if I do it has to be related to the EDS and dysautonomia. How could I have 3 very rare illnesses not related to each other. Also, I asked about mitochondrial disease and the first geneticist said I was not sick enough to have that. Hmmmmmm. I have started on the Zyrtec and Zantac low doses because I have side effects from most medicines. I also will often get very dizzy and sometimes pass out with swallowing which makes me think the vagus nerve may be involved. I have been losing weight again and am down about 10 pounds over the past year and now I barely leave the house. The dizziness is now worse when lying down (probably with my head in flexion) than even standing up (too bad I cannot stand up over a few minutes at a time). My vitamin D has always been low and I have had osteoporosis since at least 30 years old when I was first tested. This also runs in my family but with varying symptoms. Blood clots are common in my family with strokes at early ages. Sorry all this info is so scattered. I mainly am wondering if others have this strange motion sickness feeling when they are not moving. I have noticed a lot of people have motion sickness in cars but I never had problems with this until a few years ago even though pretty much everyone else in my family would get sick with riding in a car from a young age. I have tried the extra salt and lots of fluids thinking I need to get my BP up and it does run about 90/60 with the heart meds but it does not really seem to help. When I am having the really bad dizzy spells, my BP is up because of the adrenaline. Any ideas?

[Dr. Diana]

Hi, I have had dysautonomia for over 20 years (since I was in my early 20s) that started with exposure to chemicals. I had the usual symptoms of hyperadrenergic POTS with catecholamines of over 2000 on standing and heart rate increasing by over 100 within seconds of standing. I also had severe gastroparesis and I ended up with a feeding tube for a few years. I was diagnosed after about 3 years. I was started on clonidine and atenolol and they did help some but I still could not stand for long and then I had low BP and sometimes low HR. I eventually went to see a Chinese herb doc for the gastroparesis when my weight dropped to less than 90 pounds and within 2 days I could eat again. I have no idea what combination of herbs this was, as this herb doc did not speak English and only based his treatment on feeling of my pulse. I stayed on these herbs about 7 months, hoping they would help the rest of my symptoms but they didn’t. At least I could eat. Then over the past several years I have started to have constant motion sickness type dizziness and will even pass out with it while sitting down or lying down over the past year or so. I have had tons of testing. The ENT doc said my right ear was about 35% weaker than my left and I had ear surgery just in case I had a fistula but it did not help. I have had the MRI, MRA and I was told they were normal except for a slightly hypoplastic P1 segments of the posterior cerebral arteries. I was diagnosed as having connective tissue disease by a geneticist even though I had been told before that I did not have this. I also have brachydactyly which is a shortening of the fourth and fifth fingers and the geneticist thought this was probably caused by pseudohypoparathyroidism. I was born with this. I also have osteoporosis, MVP, scoliosis, thoracic outlet syndrome, TMJ and others. I think maybe my vagus nerve is involved with the dizziness and passing out sitting down but the MRI was normal. I tried prednisone and within 2 days was having a full vertigo attack. I have been told I have mal de debarquement syndrome but if I do it has to be related to the EDS and dysautonomia. How could I have 3 very rare illnesses not related to each other. Also, I asked about mitochondrial disease and the first geneticist said I was not sick enough to have that. Hmmmmmm. I have started on the Zyrtec and Zantac low doses because I have side effects from most medicines. I also will often get very dizzy and sometimes pass out with swallowing which makes me think the vagus nerve may be involved. I have been losing weight again and am down about 10 pounds over the past year and now I barely leave the house. The dizziness is now worse when lying down (probably with my head in flexion) than even standing up (too bad I cannot stand up over a few minutes at a time). My vitamin D has always been low and I have had osteoporosis since at least 30 years old when I was first tested. This also runs in my family but with varying symptoms. Blood clots are common in my family with strokes at early ages. Sorry all this info is so scattered. I mainly am wondering if others have this strange motion sickness feeling when they are not moving. I have noticed a lot of people have motion sickness in cars but I never had problems with this until a few years ago even though pretty much everyone else in my family would get sick with riding in a car from a young age. I have tried the extra salt and lots of fluids thinking I need to get my BP up and it does run about 90/60 with the heart meds but it does not really seem to help. When I am having the really bad dizzy spells, my BP is up because of the adrenaline. Any ideas?

Hi Dino68, I think most of us here can relate to most of what you’ve experienced! Although you have more conditions than I can address here, the statement about thromboses jumps out at me. One of the (usually overlooked) cause of increased intracranial hypertension is thrombosis in a venous sinus (the transverse sinus is a easy-to-spot location for this). I hate to beat a dead horse, but did you see The Driscoll Theory (or the video that is posted on the home page currently)? There is a great picture of one from my book. Because you have a narrow window of opportunity to treat this, I’d highly recommend ruling that out first. If all is well, then it may be time for the “Diamox discussion”. 😉 (see videos on that, too!). 😉 I’ve experienced it all – from feeling light-headed and dizzy to having ‘true vertigo’ — the room was moving! We’re so glad you are here, but please jump on the videos page, and see if you don’t find some answers there to help you immediately. 😉

[dino68]

Thanks for responding Dr. Diana. I will look more into the thrombosis. I have watched several of the videos and I will be starting Diamox in the next few days. I am taking it instead of Topamax for possible migraine associated vertigo or even partial seizures and I have read that it has been used successfully for hard to treat vertigo/motion sickness. I have been wearing a heart monitor for 3 weeks to make sure it isnt related to a slow HR. I am excited to hear so many people with dysautonomia and EDS are improving using your approach, especially since people with this form of dysautonomia have typically been more difficult to treat. 🙂

[sakil33]

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