summer

Katja - Thanks for the link. Wow. The things we learn here!! "Visual snow"- that's definitely one of the symptoms I'm experiencing. I also read your post in the "smoke" thread. I have suspected at times that some of this was connected to migraines, but after keeping a journal of some of these symptoms, I wasn't so sure because I could experience any of them without a migraine to follow. Then sometimes I can have a migraine without other symptoms (smoke smell, visual disturbances) preceeding it. Or, I can have them all at once. Thank you again for the info. I'll look into it more. Summer

Hi, I just responded to the post about visual disturbances and was going to add this but thought I should post it in a new thread instead. For years now, I occassionally think I smell smoke just faintly. It's actually a joke between my husband and I now because when our kids were small, I would say to him two or three times a month, "Do you smell smoke?", and he would answer, "no", but assuming I had a better sense of smell, we would go thru the house sniffing to try to find the source. I unpluged several suspect lamps, and other electrical devices over the years, but was unable to eliminate the recurring smoke. After years of searching and sniffing I have concluded it is just me. My husband and I no longer search for smoke unless he smells it too! Anyone else have weird recurring sensations like this? When the smoke smell comes it can stay for a few hours but more often it will be there for a couple of days. Yes, I do have migraines, and can have both at the same time, or either one without the other. I have not been able to really pin down a relationship between them. Can anyone relate to this? Summer

This is really interesting. I always feel like I have two different kinds of chest pain. One I have decided is due to chronic costochondritis because my ribs and sternum are painful most of the time, but then also, I have a pain that is exactly as you described above. Thanks for posting this. Summer

So interesting to read these responses, because I have lots of visual symptoms that I find difficult to describe. Katja listed "visual snow" and I as soon as I read it I thought "that's it!". I have lots of that but did not know what to call it - kind of like watching a tv channel that is not coming in well - is that what it is like, Katja? I also have lots of black floaters, worse when my other symptoms are worse. I also have difficulty changing my focus from one thing to another. For example, if I am reading a book, and I look up at something, then look back at my book, I have a lot of trouble refocusing on the words. Summer

Hi Carinara, I'm so happy for you that you have found a doctor who seems interested and knowlegable! And that he will be able to see you so soon. I'm afraid I don't know anything about the testing you are discribing, but wanted to wish you all the best and hope you find answers, and maybe even solutions. Take care! Keep us posted. Summer

Thanks Everyone, It's helpful to hear about your experiences and the decisions you have made for yourselves and your families about the flu vaccine. Sorry to have asked a question that has been asked other times. I did a search before posting but I think I forgot to put quotes around *flu shot* so I got a whole bunch of threads about the flu! Actually, though, I think it's good for some of these questions to be repeated once in a while so that newer members have the opportunity to discuss them and share their thoughts and experiences as well. I still have some more thinking to do before deciding whether to get the vaccine or not, but your responses have helped! Summer

Just wondering if any of you get a flu shot and if you have had any reactions to it (ie. worsening symptoms). My system seems to be so sensitive. Just wondering what your experiences have been. Summer

Bad reaction to it here also... and my ANS doctor also suggested that my adverse reaction to it was because I was hyperadrenergic. As Jump said, everyone reacts differently to meds so maybe you will find it more helpful.

Thank you, Julie. This really does help. The purpose of my testing may be more for occupational rather than educational evaluation, but I'm sure you are right that it would be similar. Also, I'm glad to hear you say that you think my fog would have a chance to shine! That's what I'd be hoping for. Summer

There have been a number of posts about brain fog. This is also a major problem for me. It's been suggested to me that I might consider neurocognitive testing by a psychologist to support my "subjective" symptoms (my husband does not seem to think it's that subjective because he sees it everyday). Has anyone gone through this type of testing? What is involved? One thing that I am concerned about is that I can often start out strong cognitively, but my abilities decline rapidly as I get fatigued - the longer I concentrate. If the test is an hour long, how likely is it to show the true extent of my difficulties? I often feel this way when I go see my doctor for a 20-30 minute appointment and I'm trying to explain my brain fog and they say "well, you seem very articulate..." You know the rest of that story. When I tell them some of the crazy things I have done in a fog, it TRUELY sounds hard to believe. Just wondering what your experiences have been with this type of testing. Thanks Summer

Maxine, I'm sure you're relieved to have it over with, and I am relieved for you. Take it easy this week. Get rested up for your son's upcoming wedding! I'm happy for you that that tooth is not going to spoil it for you. Summer

Maxine, I will pray for you too - specifically about the 3 things you mentioned. Summer

Sara - Yikes! How could any nurse think you were ok with an O2 saturation of 73%??? At 24 years old???!! Endure - Sorry you had to go through this. Some of these "doctor situations" are unbelievable. I can certainly understand your anger.

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Hi Amber, Hope everything comes together for you this evening! I'll say a prayer. Let us know how you get along. Summer

Hi Katja, I think you mentioned that you had an MRI. If your MRI did not show a typical pattern of lesions for MS, your doctor would probably rule out MS based on that (I'm assuming it was an MRI of the brain. Is that right?). Summer

Hi! The symptoms you mentioned are all symptoms of Chronic Fatigue Syndrome.... and POTS/orthostatic intolerance/autonomic manifestations can certainly be part of the presentation. I'm not sure what it's like where you are, but here, many doctors are hesitant to make that diagnosis because they see it as controversial even though it's has been accepted as a neurological disorder and has a recognized list of diagnostic criteria in the ICD-10 (the manual doctors use for making diagnosis). Chronic Fatigue Syndrome, however, is a diagnosis of exclusion, meaning that other more dangerous, or more treatable diagnoses need to be ruled out first. It's good that your doc is working on ruling out other disorders (ie. lupus? MS?). You can certainly have both POTS and CFS. Hope you find answers soon! Summer

I had spent a year seeing a number of doctors who had no idea what POTS, or orthostatic intolerance was. I am a nurse, and was very confident that I knew that this was what was happening to me. I decided to stop getting stupid opinions (which were only adding to the confusion), and travel as far as neccessary to see someone who knew about dysautonomia. We drove a 14 hour drive and I got my diagnosis and treatment that is working. It was well worth the trip for me. Summer

I'm so glad to hear those first few days are behind you. I have been wondering how you were getting along. Also, GREAT that you got some support from the BOE! Stand your ground against the principle. She has no right to make it difficult for you. Now is your opportunity to make your work situation into one that works for you. I'm sure it won't be easy, but it will be worth it!! Hope you're having a restful weekend. Keep us posted on how things are going and continue to take care of yourself! Summer

I had taken this earlier in the course of my illness but it dropped my BP (...and made me faint). I now take Nadolol which is also a long acting beta blocker and it seems to work much better for me. But also, I'm taking Florinef now which, I'm sure is helping to keep my BP up where it should be. Summer

Thanks everyone, It really has been helpful to hear the things that make it possible for you to work. I am beginning to consider getting back to some type of work and am thinking of what sort of things might help. Carinara- it's interesting that you mention bright lights. I thought it was just me!! The floresent lighting alone at work is enough to make me sick. Thanks for all your responses! Summer

Michelle, So glad for you that everything went well and that you got so much information. Having a supportive doctor goes a long way!! Summer

Hi Flop, Maybe you read in the more recent "salt" thread that I was not able to take regular salt tablets, so perhaps I'll check and see if I can find 'slow sodium' anywhere. Glad you mentioned that you have not had any nausea with them. If I can find them, I may give them a try. I'm not that great at eating tons of salt! Pills would be easier if I could keep them down. Thanks for the info!! Summer

I also got very strange looks when I asked for these. The pharmacist told him he had worked for 20 years and had never been asked before. Anyway, after asking at a number of pharmacies and health food places, I asked at the pharmacy if they could order them. Of course, when they took the time to look in their book, they could. The worst part is that after all the trouble and waiting for them to come in and paying $22.00 for them, I couldn't take them. I tried twice, but both times I vomited within about 10 minutes. Now I have 98 NaCl tablets in my cupboard. Wish I could give them to you!

Hi Tammy, Jennifer is right. That is a symptom of Addison's and POTS symptoms can be part of the presentation. Go have it checked out. Summer