smatuszak

Stacey, I wish that I could take all your problems away. God bless you. I hope that tomorrow will be a little brighter. Sue

I am working with an optho-neurologist who specializes in headaches. I have viacdin and dilaudid to take for the headaches. My neuro put me in the hospital for 5 days to try to break the cycle of the headaches. At that time, they discovered that I had problems with my BP. Eventually, we came up with an autonomic disorder. My headaches still continue. She started me on dexidrine which greatly helped the autonomic symptons, but the headaches are still there. She just started me on florinof last week. I'm hoping that it might help with the headaches. I don't like having to take vicodin on a daily basis, but we're working on it. I tried imitrex, but with continual headaches, that didn't work out. I would be really interested in hearing how you make out. I hope you find some answers. Sincerely, Sue

Hi, Welcome to the forum. I hope you find it as helpful as I have. I am sorry to hear about your daughter--my thoughts and prayers are with you. I have been ill for 2 1/2 years with a recent diagnosis of an autonomic disorder. When It first became disabling, we thought that it was due to migraines, because that's how it presented itself. I have had continual headaches since then. Severe ones ending in the er. I not only had the headache, but I couldn't stand or sit without feeling dizzy and sick. I spent most of the last 2 1/2 years in the recliner. It didn't bother mt to lay down. The neuros all thought that this was headache related. After two years we discovered that I had orthostatic Hypotension--from there we ended up with dysautmonia. Anyhow, after we started to figure things out--she said "How would you like to try speed?". I thought she was kidding--never heard that before. She started me on dexidrine slow release 5mg twice a day. Within two days, the symptons were barely there. I could stand and walk--it was unbelievable. I stopped sweating while walking to the bathroom. I could breathe easier. I still have the headaches and some nuesea. I have to pace myself to not overdo. I drink alot of propel. I just started florinof--hoping that might help with the headaches--have to wait to see. The dexidrine has allowed me to to so much more than I have been able to in the last two years. I, too, am taking synthroid. I have found that I really need to keep mysel hydrated. The symptons are so much worse when I don't keep up one the fluids. The dexidrine may not be right for everyone and every doc is different. Just thought I'd let you know how it worked with me. Good luck--I'll be thinking of your family. Sincerely, Sue--Pacer412

I don't know if this will help, but I try to take life one minute at a time. I know it sounds outrageous--impossible to do, but it works most of the time for me. I used to hear people say that and I would laugh to myself. I used to lead a very productive life. I had everything that I had hoped for: a great husband, three kids, a nice home. I was able to stay home my the kids. When I was 38, my husband had a seizure. He was diagnosed with a brain tumor. He lived for 4 months and one day. I just went into this mode--I don't know how to explain it, but I slowly learned how to cope with the hear and now. Things seemed to fall into place. I know it sounds stange. Two and a half years ago was when my dysautomonia became disabling. It has been a very frustrating time. I was just dianosed a few weeks ago. I know what you're talking about--I feel like I have lost so much of what I had and who I am. But, I realizaed that I am still the same person iside. It may take me longer to do things. I make a lot of mistakes, I'm not as active as I used to be. But; I still feel, I still love and I'm still a mom to me kids--just differently than I was before. Venting is a great thing. Putting things down in print or saying them out loud really helps. I hope this helps you. Sincerely, Sue

Hi, I just received the report from my testing. The doctor that did it--well, doesn't have an advanced lab. He Is the only one in my city who even tests for this. He did the testing and sent the results to my optho-neuro who really isn't sure what she's reading. She has stuck with me through most of the 2 1/2 years of the this illness. She is open-minded and eager to help. I'm wondering if anyone knows what these results mean. I've been researching on-line all day and can't make sense of anything. Deep breathing--heart rate variability 15 beats/min abnormal less that or equal to 10 Valsalva 1.4 abnormal less than or equal to 1.36 Blood pressure changes Supine 97/59 HR 64/min Tilt 80 degrees 5 min 85/56 HR 92/min LF(low frequency of the spectrum power density, .03-0.14 Hz) Primarily a marker of sympathetic activity Hf(high frequency of the spectrum power density, 0.14-0.4Hz) Marker of parasympathetic activity This is an abnormal ANS evaluation revealing mild to moderate adrenergic dysfunction with preserved parasympathetic activity. A similar result can be seen in the presence of adrenergic blocking agents and in hypovolemia. Increasing fluid uptake and salty diet may improve adrenergic responce. Florinef and midodrine are drugs often used in primary adrenergic dysfunction. Sympathomimetic drugs that act primarily on heart rate may accentuate sense of dizziness. Well that's all I have to work with and I'm totally confused. Another thing--while reading posts, one person said that people over 50 don't have POTS--or it goes away before 50. I thought that this was something that we have to live with forever and the symptons can worsen. Can anyone help??? Thank you, Sue--Pacer412

Hi Flop, Thanks for the info and for your time. My neuro and I stopped the pains meds for a period of 6 weeks, thinking that it could be a rebound effect. Unfourtunately, that was not the case. There wasn't any change in the constant headaches or the occasional severe ones. There doesn't seem to be any patterns. The only things that I have noticed are the increased fluids (propel), and being well rested. They really seem to help. Just don't know why the severe ones come. The times when I think they will come--more stressful periods--I'm fine. Go figure. Enjoy your evening. Thanks, Sue

I haven't tried beta-blockers yet. My husband thinks that because my blood pressure is on the low side it wouldn't ge a great idea, I will talk with my doc. I ended up in the er twice on Wednesday. In the morn. they gave me fluid, dilaudid and composine. Stayed for less than an hour. Went home, fell asleep, woke up two hours later and the headache was strong again. Went back to the er, they gave me more dilaudid and composine--that seemed to work. Haven't felt that great since, but al least no strong headache. I must be a baby because I can't take that severe pain. When the vomiting starts and the head is throbbing--I just can't do it. My doc says that there is no sense in anybody being in that much pain. I will be starting on florinof next week. My husband had shoulder surgery yesterday, so I'll wait till he's feeling better. I am hoping that this will help with saying goodbye to the severe headaches and I can stop taking the vicodin. I guess I just don't understand--with having a headache all of the time for two and a half years I take the vicodin so that the headache won't get severe. Is that possible??? Can vicodin do that?? Am I waiting too long to take the vicodin then the headache gets too bad? How is someone suppose to predict if it's going to get severe? Oh, how much fun life can be, right? I will talk with my doc about the beta blockers and she what she has to say. Sue--pacer412

I'm sitting here again unable to sleep with a wicked headache. Most likely a migraine with no aura. I seem to get these once every 6 to 8 weeks. Most times I can treat them at home with vicodin, composine, dilaudid and lots of propel. Last time I had one, I tried to handle it a home. When it reached the 54th hour--I was so exhausted, so to the er we went. They gave me the same meds through IV with fluids and within ten minutes it was mostly gone--and didn't return. I get so frustrated. I have a headache to some degree all the time. My neuro wanted me to try imitrex, but It didn't seem to work because I never knew when the normal headache would turn into a long-lasting migraine. Does anyone have the same problem? Any suggestione? Thanks. Sue--pacer412

I have had a few LP's in the last year and a half. After the first three I had spinal headaches, my neuro sent me in for an epideral blood patch. They worked almost immediately. The last LP were we sure that I would have to go back for the blood patch, so my neuro gave me a can of coke after the procedure. I sipped it quickly, stayed lying down in the office for 45 minutes, then went home. Took it easy for the rest of the day--and no spinal headache. I guess every doctor has their own ways. Good luck, I'll be thinking of you. Sue--pacer412

Oh boy--I hear you. This is so frustrating to me. I used to be able to carry on normal intelligent conversations. Now--- the words stumble out of my mouth. I feel like a bumbling idiot. I don't know why, but I get so exhausted--hard to keep on track. I'll be on the phone with a good friend catching up, I'll be ok for a bit--then I start stumbling on my words and thoughts--I get really tired. I say well, I guess it's time for me to go. I've been avoiding being with people who I don't know. I don't want people thinking of me as an air-head or basically incompetent.

Hi Everyone, I was wondering if anyone else has this problem. At night I always sweat alot--my sweat discolors my clothes. It's almost like it bleaches them. It doesn't happen all the time--it's just strange. Pacer412

Thank you--i really appreciate it. Life has many twists and turns, huh. My thoughts are with all of you. Pacer412

Hi Everyone, I have been reading your posts for a few months and am now a member. You guys have helped me realize that I am not crazy and that most doctors don't have a clue. I believe that I have had pots since early childhood. My problems never became disabling until Feb. 05. I had the worst headache of my life--it hasn't gone away since. It just waivers in intensity. They told me that I had migraines. That didn't answer all the other symptoms that also showed up. Not being able to stand for any period of time without feeling sick and sweating--numbness and tingling in my head and neck--serious brain fog--not being able to speak properly--trouble with coordination--only feeling half-way decent sitting in my recliner--along with many other wierd things. A few months ago, I had the TTT test at my request---I failed, no surprise. My husband was doing research for me and told me I had Pots. I laughed at him. After discussing it with my neuro and showing her info--she agreed. So now, I am scheduled for further testing with an autonomic specialist. Anyhow, my question is: Is Pots just life altering or is it life threatening? Will the symptoms get worse as time goes on? I appreciate your time and opinions. Thank you! Pacer412