dino551

Can you take midodrine and a beta blocker together? I'm on a small dose of nadolol and just starting midodrine. Thanks for any replies. Christine

Jen- Thanks for reply. Unfortunately, I take a beta blocker, keppra(anti-seizure med, and a bunch of other meds. They don't seem to help much. I have chronic daily symptoms from a so called "silent migraine". No pain, but all the other symptoms of a migraine. Still going to doctor after doctor to find some help. Christine

Sandy- How did u get diagnosed with celiac disease? Thanks for your reply. Christine

Sandy- I don't use this site very often, so sorry for all the blank posts. Anyways, I have autonomic neuropathy (small fiber). I have had crazy migraines without pain for over three years now. It resides only on the left side of my head. I have done dhe,and it has helped but doesn't completely take away my symptoms. I was thinking about going to Mark Stillman, but have appt. with Neil Cherian at CC. What kind of migraines do they say you have? I really don't get pain. I have pressure in my left eye and especially with lots of visual stimulation. I get all the symptoms of a migraine except for severe pain.. I recently went to a physical therapist and they think my neck muscles are severely tight and our compresssing nerves that could be causing my migraines. I saw you had nerve blocks. Do you have occipital migraines? Thanks for any info you can give me.

Hi All- Just wondering if anyone has had this type of experience for this long of time? I'm constantly dizzy, nausea, light sensitive, vertigo-like issues. I can hardly go anywhere in public and if I do, it is for a brief moment in the store. I have been on everything under the sun...Maxalt, beta blockers (currently Nadolol), (verampamil- currently, (depakote,-currently), (Lexapro-currently), (Abilify-currently), (Nexium-currently). I tried Topomax and it did nothing. I'm finishing my second round of high dose steroids and seem to be worse than better. Extremely off balance, heart racing after I take them, restlessness, hungry--but then nausea when the food hits my mouth. My doctor wants me to try an intravenous dhe treatment that will put me in the hospital to try to get rid of this migraine, but I have attempted twice with no success. It constricts your arteries after they give about 9 doses of 1mg dhe that should take away the migraine for at least 6 months according to my neuro. However, the side effects are terrible and that is why I haven't been sucessful as well as overwhelming anxiety on these attempts. I have autonomic neuropathy--more or less POTS, but it varies a little from typical symptoms of POTS. Those symptoms haven't really been the culprit lately. I just can't get my head to stop this nonsense. I have a hard time watching tv, using the computer, talking on the phone, eating aggravates my head (any sort of food). I cannot watch tv, talk on the phone, or work on the computer and say eat something at the same time. It's like too much info for my nervous system...it's annoying. There is alot more issues....but I'm sure we all have our strange ones. Oh well...I can go on and on...if there is anyone out there that has a recommendation, medicine recommendation, doc recommendation, anything to help me. Please respond...thanks so much! Christine

Busy MOM- I've Seen Dr. Fouad, she is o.k. I see Dr. Thomas Chelimsky at University Hospitals of Cleveland. He is a neurologist and is very good. I have three kids myself and I know how you feel. Christine

Hi Everyone- Just wondering if anyone has seen Dr. Chelimsky at University Hospitals? He diagnosed me with estrogen related dysautonomia in Nov. 2008 and silent migraines. I have had a silent migraine going on since April of this year and it has really kept me homebound. I'm constantly having problems with lights, too much stimulation, noises, smells, dizziness, nausea to really go out by myself. He has recommended for me to be admitted to the hospital for a intravenous dhe treatment for 3 days. Has anyone experienced this treatment? I'm kinda of apprehensive, but desperate at this point. The only other preventative thing they have put me on is verapamill. It has helped, but not completely. Any suggestions, comments, or replies are appreciated. Thanks! Christine

Hi Maxine- I have an appointment in two weeks to see a neurologist at the Cleveland Clinic. May I ask who you saw? I believe the name of the guy I'm see is Dr. Chemali?!? My husband scheduled it and were pretty sure he deals with autonomic conditions. We hope he does or it will be a waste of time. Thanks for any reply. Christine

I have the same problem!!!! Computer, Tv....lights, loud noises. I sometimes get the headache and sometimes I don't! But, I get the crazy vertigo feeling. It was really bad for a while where I couldn't even be on the computer! I know what your feeling!

No...never really get headaches/migraines! I think I've had this off balance problem for a while....close to when I got diagnosed. But, it really hasn't been as bothersome until 2 months or so ago. I don't black-out or anything. I just lose my balance, dizzy/off balance, and sometimes just lay in bed and the room will start spinning/or I feel like I'm spinning. I cannot tolerate the computer for too long and have a hard time talking on the phone for too long. Something with the sound....aggravates it all!! So, I don't know if I'm experiencing migraines without the head pain part?!? Or if I just have some sort of inner ear thing going on and the neuropathy is aggrevating it all. Have you ever had the Videonystagmorgraphy test done? Do you take a medicine for the migraines on a daily basis or as needed?

Hi Helen- I found your post very interesting....I recently went to the ent for a vertigo problem. They are sending me for the VNG Test because I'm constantly feeling off balance and have waves of vertigo. I cannot tolerate the computer for too long, I cannot stay on the phone for too long, and all sort of lights bother me. Same symptoms that you may experience? I was diagnosed with POTS in Feb. of 2008 and then was later diagnosed with Autonomic Neuropathy by a neurologist. Basically, I feel like it is the same diagnosis. But, I mention to the neuro about all this dizzy/light sensitivity problems and he told me to get any inner ear thing ruled out. He said its either some inner ear issue or its the migraines without the headaches. My head never really hurts-I'm always dizzy/off balance! Feel free to reply or comment... Thanks- Christine

Hi- I was just wondering if anyone has problems with sitting behind the computer for too long? I get symptomatic if I sit for more than 5-10 minutes. My chest starts too pound and I become dizzy. I have severe light sensitivity with everything. I have problems at resteraunts, grocery stores, movies, everywhere....! Anyone have any suggestion as to what I should do to help minimize these issues? I really don't want to walk around places with my sunglasses on...any meds out there that may help? I only take a beta blocker, but the Dr. wants me to start florinef?!? Scared to keep adding more drugs to the 3 or 4 I already take. Thanks Christine

Chrissy- I sent you an email to your hotmail account. Christine-dino551

Does anyone have suggestions about the dentist? I can't even get carbo caine without getting tacky and chest pain. The dentist suggest that I go be put to sleep to have dental work done. Forget that! I don't know what my body will do being put under. I don't think I could tolerate it without anything to numb me. If I would even consider being put out for my teeth it would have to be at a hospital and not in some dentist chair. Any Dentist in the Cleveland area that have hospital priviliges? Any advice or suggestion would be much appreciated. Thanks- Chris

Hi Rachel- Its actually 12:30 a.m. and I'm up because of my eyes. Everytime I try to shut my eyes to go to sleep, I'm getting real dizzy. I've been having hard time watching television because I cannot focus. I also have a hard time when there is a sudden change in light. If a room goes from light to dark or really bright to dim, etc. I'm the exact same way, its not that I can't see, I'm just having a real hard time focusing. Your not the only one with this bothersome symptom that comes along with POTS....hope things get better!!

Hi Hollie- I get some strange sensations like that. My hr will go into the mid 40's at times and I think that is kind of scary. What kind of beta blocker do you take and how much? I take lopressor, I didn't really notice things getting somewhat better until 2 or 21/2 months into it. I still have wierd sensations, but I've just been putting up with it. All I know is I don't want to feel like I did prior to Feb. 08. I was diagnosed it that month as well. Chris

Hi I have always been wondering the same thing what kind of POTS I have. My POTS pretty much came out of no where. I take lopressor to deal with it. My sleep is always interrupted with POTS symptoms. I either wake up short of breath, chest pressure, dizzy/sluggish, or my legs feel funny (weak like). In fact, I do pretty good during the day when I'm active with my kids, but at night it is abnormal if I don't wake up feeling POTSY. Its very fustrating. Any suggestions or comments? Thanks! I've thought about what if I try florinef or something in addition to the lopressor. I'm also thinking about changing my anti-depressant from celexa to wellbutrin? My prescription plan doesn't consider celexa a preferred drug anymore. Thanks Chris

Hi! I just posted something about sweating/over heating issues. I suffer with it in general, but mine is really around pms time. Just a little exertion triggers it and it feels like I've been out in the heat for a day. I keep asking myself if it is something more hormone related since it gets really bad for me around my cycle time. But, I've had numerous blood test and nobody tells me anything. Its fustrating, I know. It is also very bothersome for me at night when I'm sleeping. I wake up being very hot/sweaty and then I get cold. Hot, Cold, Hot, Cold-Its not fun. Take care!

Hi - I have most of my issues with POTS when I'm getting close to my monthly cycle. I suffer with it mainly at night when I'm sleeping, besides feeling extremely fatigue during the day when its around this time. But, when I sleep I seem to have such vivid dreams ( i know the beta blocker can contribute to this) and I wake up feeling very disoriented at times to the point that I really have to force myself to get out of bed. I'm extremely hot and sweaty and my heart feels like its coming through my chest. However, I always quickly take my hr and bp and its normally fine (thanks, to the beta blocker). I'm also noticing that I'm getting more depressed than I usually get when it gets close to this monthly time. I already take 30mg of Celexa. I know its a combination of my hormones and I suffer with depression already, but it seems alot worse compared to my episodes in the past (prior to Pots). These last three days, I have basically moped around the house and have slept. My husband has been taking care of our kids while I sit in my room and sleep or watch TV. I just have no energy to do anything right now. I need to get things done around my house, but just can't bring myself to start the task because I know half way through I will become tired and will have to stop. Is there anything out there to help with the whole sweating/hot stuff. I have already tried to take birth control pills and I still get plagued with these symptoms. Any advice? Thanks!

[size="3"]Hi Everyone! I'm new to the Forum. I was diagnosed with Pots in Feb. 08. It was a nightmare since nobody could figure out what the problem was. My neighbor who has a friend with this condition is basically who lead me in the right direction. It (POTS) came out of nowhere!!! I have only had numerous ekg's, a tilt table test, chest x-ray, blood work, valsalva procedure thing done and carried around an event monitor for a while. MY chief complaint is that I become very symptomatic when I get close to my menstural cycle. I know the Dr. has mention that this does happen. But, since I've started the beta blocker I can go days and feel really great with hardly any symptoms. If I do get an episode, it happens mainly during the night(i'm awaken from my sleep). My chest will hurt and I may feel a hot or sweaty(not all the time). But, when it gets close to the "monthly thing", I get very sweaty during the night, HOT and then COLD, Chest hurting, and sometimes a little nausea. I have polycystic ovarian syndrome, but it seems to be alot better now since I have had kids. I went from never getting a cycle to getting one all the time now. I was recently checked to make sure I wasn't go through menopause and everything came out fine. I have been on/off the b/c pill, but prefer not to go on it since I take enough medicine. So, now I wish I wouldn't get one (period) if it meant it would take away these annoying symptoms caused by the POTS. Does anyone have a similar situation, any thoughts of what I could do to make it better, etc? When I get a POTS episode, my h/r goes up as well as my b/p. Before I was put on anything, my b/p would get up to as high as 180/100, h/r 135-150. I never see it that high now since I take the lopressor. Also, any suggestions for Dentist visits. I had episode of POTS when the dentist administered carbo caine to fix some cavities. However, at the time this occurred, I did not know I had POTS. I just thought I was having some sort of reaction to the medicine. So, now I'm very apprehensive to go back to the dentist.