Dizzy Dame Posted April 20, 2009 Report Share Posted April 20, 2009 Hey all, after many years of dealing with (and healing from) POTS, I've developed severe migraines that mimic a stroke (called Hemipelagic Migraines). The symptoms of the migraines include 1-sided paralysis/numbness, nausea, severe to mild confusion, and visual disturbances. Usually they are so bad it takes weeks to recover from them. Has anyone experienced anything like this? I'm curious to see if this is something that is "more common" in POTS patients. Generaly it's a 1 in a 1,000,000 diagnosis among the average population. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 20, 2009 Report Share Posted April 20, 2009 My migraines were frequent while I was ovulating. They are infrequent now. At the time, they did not respond to any treatment or drug. My current migraines respond to Naratriptan (Amerge.) Quote Link to comment Share on other sites More sharing options...
twinmom Posted April 20, 2009 Report Share Posted April 20, 2009 I currently take 100 mg. of topamax twice a day as a preventative for my migraines. It works fairly well - I'm down to 3 or 4 a month now. When they hit, Relpax works well for me. Interestingly, my migraines really started up about a year and 1/2 ago, about 6 months before my first fainting episode and all this tachycardia business started. I don't know if it's related, but I was perfectly health, active, ect - then the migraines started, then the rest.... I don't know. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 20, 2009 Report Share Posted April 20, 2009 Dizzy Dame,hi funny i call my self your name all the time. thanks for the name to what has been happening to me for years. today which also happens often my left eye lids (top/bottom) is twitching like crazy. today is worse than ever though. it's always my left side and always feels like a stroke complete with the facial droop. caught it on camera for my doc. does this also happen?i also lose pieces of vision.take 200 topamax 2 x a day migranal i get 8 a month once you open and prime it it's only good for the day *vicodin *ultram/Ibprofen*my regular pain meds don't touch the pain Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted April 20, 2009 Author Report Share Posted April 20, 2009 Heya Bella, here is a link to a website about hemipelagic migraines, this may help you. http://emedicine.medscape.com/article/1142731-overviewAlso, yes, I also get facial droop during my worst ones. I also have become fully blind in the paralyzed side's eye and will have hallucinations in the "good" eye. Of course all my symptoms go away in time, until I get another migraine. You may want to see a headache specialist if you're having those symptoms. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 21, 2009 Report Share Posted April 21, 2009 Hiyeah I get what my doctor described as 'refractory' migraines where the aura itself is scarier than the actual pain symptoms afterwards. I start with flashing zig-zags over my vision and then I feel very dizzy and disorientated, then I start feeling paniky and my face and hand on one side goes numb and I cant move it very well. In the mirror my face looks odd when I have these aural symptoms.After an hour they subside and then i just get a classic migraine on one side.It was very scary the first time as I thought I was going to die from some sort of stroke or something, but now I know what it is its just another experience i have to 'ride out'. Quote Link to comment Share on other sites More sharing options...
mae Posted April 21, 2009 Report Share Posted April 21, 2009 Hiyeah I get what my doctor described as 'refractory' migraines where the aura itself is scarier than the actual pain symptoms afterwards. I start with flashing zig-zags over my vision and then I feel very dizzy and disorientated, then I start feeling paniky and my face and hand on one side goes numb and I cant move it very well. In the mirror my face looks odd when I have these aural symptoms.After an hour they subside and then i just get a classic migraine on one side.It was very scary the first time as I thought I was going to die from some sort of stroke or something, but now I know what it is its just another experience i have to 'ride out'.Hi, I have exactly what your describing Migraines with aura but the auras start 1st usually. I have had the aura without the pain a few times in life. Its very scary....Mae Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 22, 2009 Report Share Posted April 22, 2009 In 2000 - 3 years before POTS arrived although its possible that I had some symptoms beforehand, I had a period where i had 'visual snow' constantly for 3 months and had almost nightly migraine auras for a week. I had no idea what was wrong and my doc sent me to a neuro who told me that it was 'persistant migraine aura without infarction.' years later when i started getting these migraines with terrible auras ive noticed that the neuro was right in that they are migraine related. I still have the visual snow. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 22, 2009 Report Share Posted April 22, 2009 thank you Dizzy Dame. I'm long over due to be checked out need to check the eyes out also retinal hole.BellaMia Quote Link to comment Share on other sites More sharing options...
Heiferly Posted April 25, 2009 Report Share Posted April 25, 2009 I have them infrequently with topamax 100 mg 3x daily. Prior to that, they were frequent. For the ones I have, Maxalt usually works. I had my first migraine ever the day of my POTS onset, and have had them ever since. You can't really ask for a stronger correlation than that.I get facial numbness with mine, to where it feels like I've had shots at the dentist, but no droop. I've had ptosis in the past, and an opthamologist thought it was migraine related, but I'm skeptical about that due to the timing of it. I think it's unlikely that I have hemiplegic migraines. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted May 9, 2009 Report Share Posted May 9, 2009 I have had every kind of headache imaginable. I have migraine that could fit your symptoms, and I also have cluster headaches. For me, I know that these are part and parcel of my autonomic dysfunction/failure/neuropathy. It doesn't mean that they aren't "migraine" or "cluster" headaches...I think it means that in some, if not most, cases, migraine and cluster are forms of autonomic dysfunction. In fact, the literature often describes them as such. Quote Link to comment Share on other sites More sharing options...
anna Posted May 9, 2009 Report Share Posted May 9, 2009 I have migraines, not sure what type, I get bilateral or sometimes unilateral visual aura, often go blind in one or both eyes for 10 min sometimes longer, I get numbness and pins and needles feeling in my face tongue goes numb arm and sometimes down to my feet go numb. I get bad tinnitus, hearing goes odd, more confusion than normal, I seem to get clusters of these in one day may be happens 4 to 5 times then with the last aura I will get a head ache, might happen for a week on the trot then none for a while. But lately I have been having loads!! Starting to think it might be my neck causing problems as I can recreate these odd symptoms if I put my head back too much!!!Anna Quote Link to comment Share on other sites More sharing options...
Darlene Posted July 2, 2011 Report Share Posted July 2, 2011 i have headaches frequently, and visual disturbances Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 2, 2011 Report Share Posted July 2, 2011 I have had migraines since I started having POTS. I had not had migraines before, so this has been an issue for me for a year and a half. Sometimes I have had no migraines, lately they are very bad. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Report Share Posted July 2, 2011 I got my eyes checked out to make sure my retina was not breaking away with all the white flashes ~ I do have a hole for now that has not broken the surface ~ It does distort my vision, but they think my face going numb is a variant of a migraine ~ Come back if it gets worse ~ migraines vary from day to day on how debilitating they are. I mostly live in dark rooms, cold face cloths on my head or neck, wear sunglasses with malingerers when I can find them indoors on computer. bellamia ~ Quote Link to comment Share on other sites More sharing options...
stacdliw Posted July 2, 2011 Report Share Posted July 2, 2011 I get at least 3-4 migraines per week! Because Relpax is so expensive, I first try to relieve the migraine with Excedrine Migraine, which works maybe 30% of the time.Glad that this post was started. Last week, I just emailed my neurologist at Vandy who diagnosed me with POTS to see if my preventive migraine medication, 50mg of Topamax 2x daily, was even effective since POTS was neurologically based. My thought was that nothing was going to prevent these migraines. However, after reading everyone's posts, I have hope. It appears that I am on an extremely low dose of Topamax for the severity of my headaches. I need at least 100-200mg 2x daily vs. the 50 mg 2x daily I'm now getting.Thanks for giving me hope that I may be getting some relief soon from this horrible migraines! Quote Link to comment Share on other sites More sharing options...
abetterjulie Posted July 2, 2011 Report Share Posted July 2, 2011 I was getting headaches and migraines while on Midodrine, and ended up with Thunderclap headaches. I have read some research that shows that it could have been causing cerebral vascular spasms, that could in turn lead to stroke-like effects. I hope they can find answers for you that prevent this from happening. This disease *****.I wonder if we should have a poll to see the difference in quality and quantity of migraines from before and after Midodrine usage? Quote Link to comment Share on other sites More sharing options...
rach73 Posted July 4, 2011 Report Share Posted July 4, 2011 HiI started geting migraines at age 11. I can remeber the first time it happened. I was 11 years old and I was supposed to be running a stall at the school fete. During a break I went to play football, in my right eye I started seeing really bright colours red , green and blue bands. Where those colours were I couldn't see. Over an hour the colour bands expanded and then I couldn't see anything but these colours in my right eye. I went home for lunch the headache started and so did the vomiting. The pain was unbearable I had to lie in the dark for hours just waiting for it to pass.As a teenager I ended up with these migraines 2 or 3 times a week. I would end up paralysed on the left side of my body and have pins and needles. My speech would be slurred and I would look like death warmed up. Nothing stopped the migraines happening. As my grandmother was dying from bowel cancer at this time my migraines were put down to stress. There was nothing in my diet that was triggering them. It was just awful and it would take around 3 days for me to recover and then I would be straight into another one.No investigations were carried out and none of the preventative medication like asprin daily worked. No painkiller got rid of the pain.I only have migraines a couple of tmes a year now but daily I get flashes of colour or black and white zig zags in my right eye. I presume that this is a visual migraine with no headache? They last seconds. When a full on migraine follows I will have the visual stuff constantly for 45 mins. I either lose my peripheral vision or get tunnel vision or my vision is obscured by a white mist or smoke. In those 45 nutes I had to load up on sugar and take my migraleve tablets. If I dont take the tablets quick enough the migraine is horrific and the vomiting starts. I get very anxious when the vision problems start. I feel the same way when I get ptosis and lose the vision in my right eye from the eye lid closing.I think its curious that my migraine symptoms happen mainly in m right eye and its my right eye that also has the migraine visual warning in it.My mother, father, sister and paternal grandmother all suffer with migraines with visual symptoms starting first as a warning. We all notice as well that we are excessively hungry 24 hours before a migraine, where nothing you eat satisfies your hunger and the more sugar you can get the better. Very odd.Thanks for starting this thread. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted July 11, 2011 Report Share Posted July 11, 2011 I replied infrequent migraines with no paralysis, BUT before I started on the Bystolic (Beta-Blocker) I had probably 3-6 migraines a week depending on a lot of variables. Some weeks I would be fine, others it seemed like I was experiencing constant migraines. After starting the Meds the frequency of the Migraines has lessoned substantially; not sure why but I am happy about it. Quote Link to comment Share on other sites More sharing options...
Meg.Limbach Posted July 12, 2011 Report Share Posted July 12, 2011 When I was younger I was diagnosed with Complex Migraine Disorder.. because I would go completely paralyzed on one side of my body (it differed from one side to the other).. I may have to look this up now because it sounds like me to a T. I was just recently diagnosed with POTS. I now just have horrendous migraines without paralysis. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted July 12, 2011 Report Share Posted July 12, 2011 I have frequent migraines, and after being fairly well controlled for a while, they seem to be increasing dramatically of late. I wish I knew why! I have had some med changes as a result of my EDS type III diagnosis, and I know narcotics can cause rebound headaches, but I am on constant meds. (fentanyl patches) I have had a tremendous amount of visual symptoms, blurry/double vision, auras, snow, and shooting lights. I will be back in Ohio next week (after 7 months in North Carolina because I needed additional care. My folks are down here. But my boyfriend proposed, and Mom had a severe back injury, so I am headed back home.) and I have to say I am really relieved that I will be able to see all my wonderful Cleveland Clinic docs, and Dr. Grubb. Hopefully they will have some bright ideas to help! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2012 Report Share Posted February 28, 2012 ive got all the visual stuff - snow, occasional migraine aura without actual headache, etc. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted February 28, 2012 Report Share Posted February 28, 2012 I'm taking a new look @ this post now that mitochondrial disorder is in my life now. I now believe the headaches that take over one side of my face that are stroke like are from that. I always called them a variant of a migraine, but the visual stuff is driving me nuts ~ Quote Link to comment Share on other sites More sharing options...
McKenzie Posted February 28, 2012 Report Share Posted February 28, 2012 My migraine began with POTS symptoms too. They gradually damped up to a point where they never really went away. I have new glasses now to correct Vertical Heterophoria, my migraines are only occasionally now. I still get blurred vision/double vision, that is also something I didn't have pre-POTS. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 10, 2015 Report Share Posted February 10, 2015 First migraine tonight. After a normal ct they concocted a variety of meds. Needless to say... I walked in with a migraine developed bad pots symptoms then home to sleep it off. What is intriguing to me is my joint pain is gone. They have me 1 anti nausea, 1 pain, 1 anti inflammatory and a corticoid steroid. Tonight my vitals are norm finally after being tacky and I can think normally. What a day Quote Link to comment Share on other sites More sharing options...
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