mkoven Posted May 29, 2009 Report Share Posted May 29, 2009 anyone have headaches brought on just by being upright? My docs say this is usually a sign of a csf leak. could it just be from dysautonomia? Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 29, 2009 Report Share Posted May 29, 2009 anyone have headaches brought on just by being upright? My docs say this is usually a sign of a csf leak. could it just be from dysautonomia?All the time. Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 30, 2009 Report Share Posted May 30, 2009 Yes, this happens quite often, especially if I'm late for a dose of midodrine or if I don't have compression on. 14 years ago, before I knew I had POTS and blood pooling issues, I ALWAYS had a headache. Treating POTS has helped the headaches, but it hasn't taken them away completely.Rachel Quote Link to comment Share on other sites More sharing options...
bizbiz Posted May 30, 2009 Report Share Posted May 30, 2009 Yes. My headaches are never there when I wake in the mornings, but gradually build in intensity as the day goes on (or the longer I am upright). Until I got the flu a couple of weeks ago, my POTS was greatly improving and so were the headaches. Quote Link to comment Share on other sites More sharing options...
summer Posted May 30, 2009 Report Share Posted May 30, 2009 Yes, definitely. I can develop either "coat hanger pain" or migraine from standing too long. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 30, 2009 Report Share Posted May 30, 2009 headaches so bad!coat hanger pain as well! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 30, 2009 Report Share Posted May 30, 2009 I usually wake up with a headache, and then it either fades during the day after I have some coffee and food, or it gets worse and I can't stand noise or light - or anything! That's when I break down and take a pain killer. I use either Percocet or Darvocet. Anyone else have to use pain killers? Also, my pain is usually between the top of my spine and the back of my skull. Others?In peaceful silenceJana Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 30, 2009 Report Share Posted May 30, 2009 Yes!!! I always wake with a headache. It's one of the reasons I was recently sent for a sleep study because sleep apnea is often a cause of morning headaches. (I don't have sleep apnea. I didn't even snore.) What I've been doing lately is taking advil as it helps somewhat. I also drink 20 oz of G2 with 1/2 a teaspoon of salt added before I get out of bed. That seems to help a bit too. And yes, I have constant pain which varies in intensity from my upper back to the back of my head. I've had that for 10+ years, but it's worsened with POTS. Some days I do have to take 1/2 a vicodin with the advil, but that's usually if I'm still in too much pain at bedtime so that I can sleep through the pain. I do think it's dysautonomia-related because I notice my headache and coathanger pain are better when I wear leg and abdominal compression. Quote Link to comment Share on other sites More sharing options...
jump Posted May 30, 2009 Report Share Posted May 30, 2009 Yes, in fact I would say I ONLY get headaches because of standing. I don't get migraines, and prior to developing POTS I never got headaches. Now I get them (and coathanger pain) if I stand still for too long, or if I have an overly-upright day.What is a csf leak? Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 30, 2009 Report Share Posted May 30, 2009 Thankful,Thanks for your kind words this morning, as it the warm support I've been finding here that has been helping me the past few weeks. I've mentioned my little stories as they are what get me through the the week. I'm very close with especially my granddaughter as during her second year of life I spent most of the time on the floor with her while her mom worked. I was, "VERY BLESSED AS THIS LITTLE GIRL BROUGHT ME BACK TO LIFE WHEN I FELT I HAD LOST EVERYTHING." I was able to drive 1/2 hour then and now I'm house bound. She gave a purpose in life, they say that's what woman in there 50's are looking for, a purpose. It was a special time I'll never forgot and have documented in photos for her as I love to take photo's. My grandson, hasn't been able to find his words till just the other week and has been speech delayed. As he would struggle to find his words I would often relate to how he felt. He was a special gift to me, as he was birthed at home and I was there watching/ shooting pictures along with his older sister and my oldest son. Words can't explain what took place between all of us that day. I call it Beautiful Love that all mother's and daughter's should share this gift together. Women did this long ago and now we are getting back to it. Since then my little girl has been pretending to give birth to a son, a son, a son yelling out in joy with a doll between her legs and pretending she is crying. She's been told to please just play this out at home now. She keeps me laughing. Waiting for the day the preschool calls and reports she delivered a doll at school.My friends used to think I was making up stories about her till they met her. We often laugh and say we should sign her up to be a therapy child at a senior center as she is so loving and caring. So, I hope no one minds if I add in a story or two here and there as once a week when they are around they drive out for a day of the sillies with nannie. My grandson just found his words at 26 months and is like a tornado upon entering my house. But I wouldn't have it any other way. I'm the happiest when I'm with the people I love.The headaches yes, I have to take topamax daily am and pm but high doses will make you lose weight and I lost weight soo fast that I got too thin this was pre POTS and had to have my gall bladder out. Was told this happens when ones loses a lot of weight, plus no one tole me not to diet on this med. Don't diet on this med you lose weight very quickly with out it. Yesterday, when I picked it up at the drugstore it was now in generic form. I'm not happy about that. We shall see. (The Neuro) said this should be the first med to treat long term headaches.I also get breakthrough headaches and take migranal wonderful med comes in viles that you have to prime. insurance will only allow me 8 a month.( The Neuro/pots spec said don't use this all the time only when real bad or you'll get rebound headaches.) In the winter it's really hard to prime and use this med in the summer it's fine. You just can't you it every day and don't ever use it if they put you on flagyl and you have bowel infections. They interact and sometimes they forget to tell you.Nothing helps these headaches. Except Really Hydrating yourself and a narcotic at low doses and I mean baby doses. Tylenol and codeine,( the Neuro said this is what you have to use to have any quality of life when they are so bad) early evening and at bed or one at day if your at a family function and that is the only way you can be there as you head hurts so bad. Even then sometimes, the pain won't go away. Then it's under the sheets, no lights curled up with my best friend, my dog.Medication is all about making choices to have a better quality of life. Taking certain one means no driving or reserved for just bedtime. Your whole life changes and you have to think all around how you feel and what you need to do to make it through the day. ~I keep thinking of that song: "O-o-h child things are gonna get easier" by stan vincentBlessings and Love to all~ Quote Link to comment Share on other sites More sharing options...
mkoven Posted May 31, 2009 Author Report Share Posted May 31, 2009 Interesting to hear how common this is. csf is cerebral spinal fluid. The brain floats in it. most docs think of orthostatic headaches as caused by a leak, even small. But I guess fluctuating bp would also affect csf pressures. Quote Link to comment Share on other sites More sharing options...
mattsmum Posted May 31, 2009 Report Share Posted May 31, 2009 Where do people get these headaches? Mine occur at the back of the head straight across like a tight band. Quote Link to comment Share on other sites More sharing options...
bizbiz Posted May 31, 2009 Report Share Posted May 31, 2009 My headache is always at the back of my head, top of neck / base of head. I wouldnt say it is an actual headache - as in pain - but more a feeling of pressure. Also, majority of the time it feels more intense on the back left side of my head.My POTS specialist said that these types of headaches are very common for POTS, and that a lot of his other patients have them too. Apparently it is because the brain is deprived of blood in the upright position so it 'steals' blood from the neck and shoulders. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 31, 2009 Report Share Posted May 31, 2009 Yes! Mine are at the same place...Right at the base of the skull, so I've also wondered about a CSF leak. What is a 'coat hanger' headache?Thanks,Jana Quote Link to comment Share on other sites More sharing options...
It'sMyLife Posted June 1, 2009 Report Share Posted June 1, 2009 I started getting these "tension-type" headaches around the same time I started experiencing POTS symptoms but neither the docs nor I made the correlation. Anyway, one thing to keep in mind is that these types of headaches can be caused by subluxations of the C 1,2,3 vertebrae. These are also the vertebrae that house the nerve pathways responsible for autonomic nervous system regulation. I wish I could add some references to this post but I don't have the time right now. If you look it up you should be able to find some good articles. I have always dreaded cleaning up spills on the floor or especially carpet due to the constant change in posture. I always ended up with a headache. Quote Link to comment Share on other sites More sharing options...
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