Jersey Girl

Good luck today Sophia. I have been thinking about you and hope that all goes well later. Martha

Yes, I have this also, but I feel like I am being pulled to the left. I had vestibular testing which wasn't completely normal, but I was told that it wasn't a classic vestibular issue. I went for vestibular training anyway with extremely limited improvement. I have also been diagnosed with POTS and believe mine to be viral in origin as well. I think some of these symptoms are more classic of chronic fatigue syndrome, but I am not an expert in either POTS or CFS. Martha

I have to second what everyone else is saying about getting some face to face counseling. It is very hard to deal with all these changes to your life by yourself. Martha

I cannot have "epi" at all. I have it noted in red on my dental and medical records. I had this reaction even before developing POTS. Martha

Hope you're able to do a little more each day. I was like that when I was first ill for weeks, months. Martha

I find that certain times in my menstrual cycle definitely make my vertigo symptoms worse. Hopefully, your symptoms will resolve, but if they're new you should have them checked out by the doc. Martha

After I eat, I try to lay down for a little bit. I do better "grazing" but I don't have a buffet wating for me at any given moment! It might not be the "baby" food that triggered your episode but the combination with the beverages that we're encouraged to drink. I think any stomach expansion triggers many of my symptoms, after all, that fast occuring may be an autonomic reaction. Martha

Sorry you are having such bad headaches as I did for years--I thought they would never get better, but they did slowly over time. The only thing that helped me when they were really bad was Neurontin. The only side effect I had was being a little drowsy all the time, but I got kinda got used to it. It wasn't like I was going anywhere anyhow. Martha

I asked Dr. G at NIH over two years ago if having a hysterectomy would help me, because I was desperate for anything to make me feel a little better, and he told me that the hysterectomy would not help my symptoms, although acknowledging that the hormonal fluctuations associated with having periods would definitely make one's POTS symptoms worse. I am glad I didn't have a hysterectomy, but I did endure 2 traditional D & C's over the past 4 1/2 years that did help somewhat with the heavy bleeding. Just in the last few months my periods have begun to lessen finally, but now the hot flashes are unbearable. I also tried Alesse and Prometrium early on and ended up being hospitalized because of such severe reactions. I hope you get some relief. We are all different. Martha

My heacaches were so bad that I took Neurontin,working up to about 400mg four times a day and slowly cutting back over a period of years. It was the only thing that helped, although it does make you a little tired, but it was worth it. If you tell the Doc or better yet, his nurse, that you are in pain, maybe they would see you sooner. Martha

Hope the tubes help. Sorry to hear about your cat. The stray that adopted us a few years ago had nasty abscess that required incision and drainage tube recently. You should take it a little easier after surgery. With concern, Martha

I also have a history of reacting to flu vaccine, starting with the swine vaccine I received in my 20's if anyone else remembers that fiasco! I also became ill with flu like symptoms after receiving the flu vaccine 5 years ago in the Fall before the Spring I became ill with POTS. So I plan to pass. Martha

Hi! Thanks for your response. I bought bottle of Nature's Bounty 1 mg Melatonin and tried it last night for first time. I was afraid to take a higher dose since I am the Queen of Sesitivity, and was pleasantly surprised this morning how well it worked. I am thinking of ordering the 1.5 mg extended release melatonin tab on line now. I only paid $5 for the bottle yesterday. I don't remember feeling hot last night either, but now I am up for just over an hour I am feeling hot again. I think some of it is positional. Martha

I have had alot of trouble waking up in the middle of night and not being able to fall back to sleep. I know some of it is because I can't follow my usual mild exercise routine at all and sleep very well with this cast on my fractured wrist, but I need something to help me over this bump. I also am incredibly hot under my skin (I guess hot flashes at my age but I feel so incapacitated by them). I read the previous 3 page post and realize that this is a common issue so I thought I would take a poll on what meds you take if any to help you sleep. Martha

I had this for almost a year when I was initially ill. I was afraid to turn over in bed. I had all sorts of tests and eventually had 6 weeks of vestibular rehap, but then one neurologist told me later, it wasn't really vestibular, he didn't know what it was. The rehap only helped a little, but I really had POTS which was undiagnosed at the time. Martha

Unbelievable! I was on vacation with alot of family. I tried to run after ball and crumpled to ground. Guess I can't run! I'll have to stick to pool. I have had near misses before and usually hold on to my husband if I'm really dizzy, but I felt a little better when I attempted this and look what happened. Martha

SO INTERESTING! Don't you just love the internet where we can share news with our neighbors all over the world? I am hopeful that something will come of this. Martha

Hi! I would force myself up to get my son on the bus and then go back to bed. It would be such a struggle to do that. I would do one thing, lie down, get up, do one more thing, etc, etc. I couldn't even sit at the table and have breakfast with him! Mornings are definitely the worst time of day, but it doesn't get much better later either. Martha

Hi! I get that too. I thought it was related to perimenopause issues (like hot flashes without the sweating maybe?) but I really don't know what causes it. Perhaps it is all due to the dysautonomia. But I feel really rotten for hours when I have it and usually take to bed or the couch. I try cold fluids but it doesn't make a difference. Maybe it's just related to the weather. Martha

CONGRATULATIONS! Oxford is so fabulous. I love Scotland but wouldn't want to be in the hospital there. Martha

Although I have been officially diagnosed with POTS, I do believe I have some overlay with both these conditions. I get weekly updates from this site and really liked this article on dealing with chronic illness. Martha

I am 53, got this at 49 and have aunt who developed orthostatic intolerance in her 80's. Martha

Yes, I had multiple MRI's, MRA's and MRV's because many different physicians were convinced that I had either a stroke or was developing MS. I even had a spinal tap. I had 2 instances of side-by-side double vision within a minute that just lasted a few seconds. It was very frightening. The spinal tap a few months later showed a few cells that were likely indicitive of a viral infection but no cultures came back positive. I get greying out of vision also due to POTS. My left eyelid didn't close completely for a while when I was first ill too. Martha

I had this urine test 3 times in the first yearof POTS, because they were so sure I had pheo, but I didn't. I don't know why it took so long to get a tilt table test with someone who knew how to interpret it when these tests were negative. Oh, well. Martha

I USED to take NSAIDS, but have since discovered that I am reactive-(allergic to Relefan)- to them. They increase my heart rate and make me feel just generally lousy. So I am not surprised by this. Martha