misstraci

Running Wild, I'm sorry. Sorry that you aren't doing well and feel out of options, I can really relate because I've felt like this a lot lately. I'm happy that your vascular surgery was a success!!! That is a positive thing in the picture. Maybe coming off the birth control will also help. I don't have any suggestions but I wanted to tell you that I can really relate and I hate it and I wonder too if I'll just wake up one day and be well.

Thanks FarmerAmy for the link, I'm going to go read that. Sorry I never responded to your previous message, I'd love to see an integrative/functional medicine or someone other than mainstream in the hospital kind of doctor. Since my insurance more than likely doesn't cover it, I can't afford it right now. Did you receive your test results back yet? I'd love to hear how it went. How is the no sugar/gluten/carb diet going? I really feel that the sugar is terrible and I also feel that I personally am really addicted. I told myself that today is the day and I'm going to withhold it from my diet. I really hope I have the strength and willpower to do it. I know that it would benefit us all to quit eating so much of it.

I'm not sure about the meds because I don't currently take any but I think diet has a whole lot to do with it. You may already eat fairly healthy so, then I have no suggestions but if you don't, then I'd focus on food first. I get super bloated and burp a whole lot. It worsens with specific foods, what you would guess, such as fried, fatty, sugary, stuff like that. I know that acidic foods such as tomatoes make acid reflux worse.

I have stomach ulcer but negative for h pylori. Not sure about your question though, if it goes away with the treatment.

Thanks BellaMia! Batik, no, I haven't called yet, I'm terrible but I haven't found the time or energy to do so. I'm still thinking its weird as well but welcoming anything that may help me and that is why I jumped on the meds and didn't oppose. Now however, I'm wondering if I should stop this particular one. This morning my blood pressure was really high or at least for me (130/90) and I felt extra terrible. It was scary, still not feeling too much better. I want this out of my system and start over fresh, blah.

Thanks Batik and everyone for responding. I like hearing how others felt and dealt with certain medicines and situations. Jen, glad it helped your ear pain. Like Lump said, I've only been on it two days but I'm very dizzy. I can't tell what's new and what's my lightheadedness that I'm trying to get rid of. Like Batik said, this is for migraines/epilepsy. The doctor is calling it migraines but I'm thinking seizures. Anyways, two days in and right after each pill I felt really nauseated and shakey but once i fell asleep, I slept good. And wow, I didn't know that coming off of something like this would be like coming off benzos, poo. I hope it either do well and stay on it forever or come off quick and not have to withdrawl on it.

How long did it have to get in your system before you felt any better? (if you felt better) and how long before the side effects went away? (if you had any side effects) Thanks

Oh ok, I understand now. They have to do your monitor and get those results prior to the referral. And I hope the medicine doesn't cause any issues for me. It is weird to give me a full time med for absent migraines I'm not even feeling. I think he's going off the EEG activity that was abnormal and giving me something that will even out abnormal waves and hopefully some of my severe lightheadedness can be controlled with the medicine. This is what he's telling me, I really hope he's right.

Kevin, sorry that your reaction was bad as well, seems like thats the pattern I've seen here. Batik, sorry you've been sick for so long, I've only been sick for 2 1/2 years and it feels like forever. You're right that the natural treatments tend to get very pricey and are hit and miss. I do hang on to the littlest hope of something that may be my answer. I was bitten by a tick but it's been years ago, however, two weeks prior to when I first got sick, we were spending lots of time at this creek back in the woods, a park by my home. I always keep it there as an option since I have a LOT of the symptoms and no other test is coming back positive. Speaking of the neurological route and the nortyptiline. I called my DR and asked for an alternate but similar medicine. He was very nice about it but was asking why I had the concerns and thought it would increase my HR and stuff like that. I had done my own research as well as asked you guys, I heard nothing positive from either outlet. I told him that I already have a pretty high HR and i didn't need anything that may make that worse. He told me since I was going to look up the meds, he would give me a list and i could choose what i wanted to take, I thought that was very nice. He gave me (gabapentin, lyrica, cymbalta, lemintal, or tegritol) I chose gabapentin. I think I'll start it this weekend and i hope i can see some improvement in the near future. Batik, sorry that you can't get the appt for another two months. How come it's going to take PCP so long to refer you? I hope it turns out that it happens sooner than later. Fingers crossed for you!!

Sorry to hear your story and what you've been going through. This is not fun at all. My illness came out of the blue. Yours definitely sounds like POTS to me! Don't be afraid of the TTT, I know its different for everyone. Think of it as at least you will get a diagnosis from it. Mine was a bad experience because the nitroglycerine made my heartrate shoot pretty high. Good luck, welcome, and keep us informed!!!

Wow, I ca totally relate to all of you. You guys are silly, I like some of your explanations. I feel often as though I'm having strokes and heart attacks and yes, how would we ever know if we really were or if it was just our "normal stuff". I feel WEIRD everyday and I wonder if I'm still have way undiagnosed because of this because when I tell a Dr that my head feels "weird", they start writing the crazy pill prescrips, you know. I try to explain and my best explanation, like westernmass, is seizury!!!!!

Right here!!! I can feel so-so one moment and deathly the next. My body is a drama queen

Thanks for the info and phone numbers Batik! I will definitely give it shot. I don't mind calling internationally. I will also try to look up someone local as well. As far as lyme disease, I think I'm just trying to prove it to myself that feeling like death and no one knows why just has to have a name. We've ruled out so much, I've had so many tests, yet I have such widepread symptoms, what else could it be I'm just frustrated. I know that both types of medicine have their goods and bads. It just seems like recently that I have read a lot of good things about going natural when trying to deal with an illness, especially a chronic one. The book I'm currently reading talks about the mind and how powerful it is, how this surgeons' patients "willed" their cancer away by thinking positively. Breathing is key, exercises such as Tai Chi and QiGong are supposed to be really good. And of course only the best/whole foods diet. Massage, acupuncture, herbs, etc etc. stuff like that. I'm hesitant on both levels actually. I just want a name for what is causing my suffering. POTS/Dysautonomia is fine but that is not my "disease", that is my collection of symptoms, there is an underlying reason for the condition, I have to find out what it is. Oh gosh, sorry if i sound like i'm venting. I didn't mean to

ChristyD... sorry it didn't work for your son either! I hope something turns up that will help him. Apparently I am having the silent migraine as well. Batik... I'm not sure how many "migraines" i've had because I didn't know that's what it was, still not convinced. All I know is that the lightheadedness I used to think was horrible is nothing compared to the lightheadedness I've had these past two weeks. It feels as though there isn't much blood in my head. I feel like my head is a balloon and if someone popped it, maybe I'd feel better I'm in the states and it does seem odd to try me on something for something I didn't know/don't agree is happening. Eww, your gyno did that? That seems so uncool. I've read a lot recently about western medicine/eastern medicine and how the jist of it works and the pharmaceutical companies and their part, swooning the doctors, pushing the drugs who then, like you say, the dr then pushes on us. I promise to proceed with caution. I had my MRI yesterday and of course haven't heard back about it yet, but I am convinced that if I do not have a brain tumor (not thinking negatively but what else could cause such horrid effects on my body), then I am convinced I have lyme diesase!!! Just my own personal thoughts. ZAP.... Sorry it didn't do right for you either. Looks like this drug is more bad than good. I'm glad the propranolol is helping a bit with your dys symptoms, that is good news! Does your dysautonomia dr know about migraines? Maybe he/she could take that on as well.

Oh my goodness SpinnyC. I'm sorry to hear of your reaction. I read that though, I read that tachycardia was a side effect and that is why I'm concered about it a little. See and we start out with tachycardia, we don't want to add to that. Sorry about the reaction and the dr's disagreeing. I'd also go with the cardio's point of view Batik... Friday before last, I had an episode at work (and then two additional times over the weekend) in which I smelt really strong burning and it felt like everything stopped, I couldn't breathe or swallow and of course I was extrememly lightheaded. I had went to the ER that Friday and the lady said I had a migraine or seizure and to follow up with neuro. So, I wasn't able to see them until yesterday and they wanted to do an EEG to rule out epilepsy. He told me that the results were abnormal but said it wasn't seizure activity but that it was migraine activity, that was the first I've ever heard of that. I do not have headaches. I've never had headaches. He said that you can have migraines without pain ????? Seems odd to me. And I'm not familiar with other migraine symptoms so I'm not sure. I had the "aura", that burning smell. I don't feel nauseated/vomit, none of that. I do have head pressure in the back and that is why he gave me the shot in my neck..... which has not helped yet.

and on one of the drug descriptions, it says this..... "Like all TCAs, nortriptyline increases levels of norepinephrine and serotonin, two neurotransmitters, and blocks the action of acetylcholine, another neurotransmitter." Now what is it with dysautonomia that "norepinephrine" does? I've heard this plenty of times but not sure I understand it's position. As well, the drug side effects are increased heart rate and low blood pressure....... hello....... now i'm wondering should I even try it.

Have you or do you take nortriptyline? My neurologist prescribed it for migraine activity on my EEG yesterday. I wasn't aware I was having migraines but apparently..... I just wanted to see what you thought of this drug. Thanks

Yes, I agree that it varies. From doctor to doctor really. I've been charged and had to wait and sometimes I just sign a release form and they will fax it over. Like someone else said though, they'll do it free and fast to other physicians but if it's for yourself, sometimes they make you jump through hoops to get your files. Good luck, hope it works out.

I had my EEG done today and it showed abnormal activity the doctor said but he didn't call it seizure activity, he called it migraine activity. I've never heard that before. He wrote a prescription, I forget the name of the medicine, but to take at night. I was also telling him about the back left side of my head hurting/pressure and radiating into my neck. He said that an occipital nerve block would help that. I was reluctant but I did (a shot in the neck) and at first it felt fine but now, about 7 hours after the fact, my neck is excruciating, it feels worse than before he did that. Supposively the steroids don't kick in for a few days. Has anyone ever had the shot in your neck? Did it help you? Have you ever heard of migraine activity on an EEG?

Yes I get a noticable increase, Like Spinny says, it's not fun being sick on top of sick.

I definitely have this!! It's very frustrating and I also haven't driven in quite some time. It sometimes seems as though I'm looking through a glass (like a juice glass or coke bottle). Things are distorted

Thanks Naomi and Katy, that's funny. I wouldn't mind smelling bacon or chocolate chip cookies

Libby, thanks. Sorry you've expeirienced this as well. Regardless of why we smell smells that aren't there; it's not a normal thing! And you have no idea how angry I am that the ER didn't and never has taken me seriously. When I went multiple times at teh beginning of my POTS stuff, I would get the RXs for xanax and valium and be told I just need to chill out and take it easy. It's very degrading to be treated in such a way when you are having ligit symptoms and someone doesn't believe you. arrrrg. Naomi, I made an appointment with a neurologist and the soonest they had was next Monday for an EEG!! I've never had one. Is there anything special I should or shouldn't do prior to? Such as take certain medicines or something. This is vaguely on the same topic but more directly about hormones but I was reading a book last night that my friend got me about hormone imbalance and it was talking about how a good majority of Americans are estrogen dominant and most don't know it. It was suggesting a bio identical progesterone cream and listing all the benefits for it. One of the benefits were decreased electricla activity in the brain (and beside it, it said decreased seizures). I wouldn't be surprised if I and a lot of us were in that boat, by having too much estrogen in our bodies. I was unaware that not only does it occur naturally in our bodies but we get estrogen from food (all animal products, soy, etc) and also from certain chemicals, makeup, cleaning supplies and I never knew that.

I actually think the cool spurts we've been having in the mornings here has helped me a bit. When I'm hot and sweaty, I feel agitated and can't breathe well. I know it's different for everyone. My mom has migraines and whenever the weather changes, she gets a really bad one as well as when there are full moons. Not sure why.

Relax, sorry for what you're going through as well. Having symptoms at night and interfering with your sleep is not fun. Thanks POTLUCK for the link. Do you have these types of seizures? If so, what kind of treatment are you on? Medications?