khaarina

I have Hashimotos. My doc suggested L-Tyrosine and I took it for a few months, but it did not seem to do anything for me.

I am thinking about talking to my doctor about trying Mestinon. I would like to hear about any experiences with the medicene. Did it help? What symptoms did it relieve? Side effects? Other medications you took with Mestinon? Etc.

I took Piracetam for a while in 2010 as part of a lucid dreaming experiment http://en.wikipedia.org/wiki/Piracetam#Piracetam_and_lucid_dreaming I found that it helped me concentrate and work better. I believe the dosage was 5,000mg/day, split into two separate doses. Did you feel the effects the day you started, or did it take a while? Were you confident it was the Piracetam and not a placebo effect? I'm still iffy. I think it might be helping, but the results are vague and difficult to identify.

I ended up changing my dose from 5g twice a day to 2.5g three times a day because I experienced what I believe to be a crash. About 3 hours after taking 5g I fell into a sudden depression. It was gone when I woke up the next day though and I haven't had the problem since I adjusted the dose. I haven't noticed any other negative side effects. As far as positive effects: it is difficult to say. I have found it is easier to hold a conversation, but that could be a placebo effect. I also seem to have more mental energy. I want to do more things, be more productive. I still haven't gotten used to the taste. I tried mixing it in greek yogurt once, bad idea. Better to mix it with liquid so you can get it down fast.

I just bought one of those mister bottles with the little fan. I haven't tried it yet, but I think it will be really good now that it's starting to get hot outside.

Just took my third dose. I haven't noticed any significant improvements, no side effects either...well, headaches, but I was having those already. I did read that it can take up to a month to start noticing the effects. Not sure how accurate that is, but I plan to at least finish the whole 100 grams before I decide whether or not to keep taking it. Will post back soon. In the meantime, has anyone else here tried Piracetam? I would be interested to hear about your experience while I decide if it is worth the money to keep taking it.

I also get high bp spikes. I will have to look into that.

I live in Florida and the heat affects me a lot. It helps to run cold water over your hands and wrists. You can do this in a public restroom if you are out. Also ice or a cold pack on the back of the neck.

I got my order of Piracetam in today from Cerebral Health. I just took my first dose (5 grams). This is a higher dose than many reccommend but I did a lot of research and I am comfortable starting at 5 grams. I got it in powder form because it is cheaper (100 grams for $10 +$7 shipping) and mixed it in a little Kool-Aid. It was absolutely discusting. I eventually had to wash it down with food to get rid of the taste. Anyway, I know that a lot of you are interested in learning more about nootropics due to our brain fog and vascular issues so I will keep you updated.

My doctor put me on birth control pills. He said it should help stabilize my hormones throughout the month. I can't say 100% that it is helping, but it seems to be. I still get my periods but I have not been relating the severity of my symptoms with my period lately.

If it wasn't your illness it would be something else. That's mother in laws for you. I speak from experience, unfortunately.

Thanks, Alex. I skimmed all the articles and though I had never heard of it before, AAG does seem to fit. I will definitely bring this up to my neurologist when I find one.

I went to the doc and he told me that my pupils are too dilated and this is why I am getting eye sensitivity and headaches. He said to wait and see if it goes away on its own. It hasn't. Actually it's worse. My pupils wont constrict in the light. It hurts to even look at my iPhone right now with the brightness turned all the way down. Does this go away, or are there treatments for it?

I'm jealous. Unfortunately, the only thing Florinef gave me was a permanent headache and puffy skin.

I have tried SSRIs (no help). I have not tried Mestinon or Clonidine.

My docs don't know what else to do with me, so I thought I would see what you all think I should do. Here's my situation in short: I am currently on Midodrine and beta blockers and doing well most days as long as I am home where I can control my environment and avoid triggers. Once I walk out the door it is all over. I am thrilled to feel somewhat well again, but I'm 31 years old with a husband and two kids, I can't just resign to being a hermit for the rest of my life. Florinef did not help. Water and salt loading was a bust, as were compression stockings. I don't pass out, well maybe I would if I let it go on too long, but mostly I just get very sick when I am up: tachycardia, hypertension, overheating, sweating, shaking, ringing in my ears, nausea, cognitive issues, etc. I did pass out during my tilt table test and my heart stopped for several seconds. I guess my question is, if you were me, what would you try next to get back on your feet?

That's a lot of metropolol. Could be the cause of your crashing because bbs can bog you down, or could be that it's the insomnia messing you up. Either way, I would ask the prescribing doc again if its possible you are on too much or need a melatonin supplement.

I choke on drinks a lot. I think mine is due to GERD because it seems to have improved now that I'm on Prilosec. You can have acid reflux and not even realize it. All I had were hiccups and the choking for a long time before I realized what it was.

I was taking them in the morning but I noticed that my heart rate was always about 10-15bpm higher at night than during the day so I am taking half in the morning and half at night. I just started doing this so I don't know how it will affect me overall yet, but my heart rate is more consistant so far. Do you have trouble sleeping as well? My insomnia is brutal and I think it may be the bb, but I can't stop taking it because my heart rate will go through the roof. I have been thinking about trying a meletonin supplement. I'm going to bring it up to my doc on the 3rd.

I get really sleepy/fatigued around 5pm and it does feel like I am crashing as you described it. It comes on suddenly and I feel like I am just going to fall asleep where I am no matter what I am doing. I have the most energy at night around 9pm, then around 1am I feel like death. It's wierd because it doesn't seem to have anything to do with what I am doing that day or how much energy I've spent. It's just expected that I will crash in the afternoon and function best at night. I haven't found anything to keep going when I crash unfortunately, so I just have to work my life around it. I've had my theories on this, but I don't know really what causes it. Could be medication, I'm on beta blockers and I've heard that those screw up your melatonin.

Interesting, but after checking nearly every one of those symptoms, also a little depressing lol.

1. When you feel too bad to go out, but you really want to, or feel obligated to...don't. If you refuse to listen to your body and exasperate your symptoms, one or more of the following will happen: 1. You will pay for it by feeling terrible for up to two days. 2. You will ruin the outing for anyone who is with you. 3. You will pass out or end up in the hospital. 2. Read about your condition, but don't get carried away. When we understand why we are feeling the way we do, it is easier to accept it, get treated, and get past it. However, it is so easy to obsess over it. When we obsess over our illness, we stress ourselves out, and stress can trigger our symptoms. Also, if it becomes aparent to our doctors that we are obsessing, they will start to dismiss our concerns and we won't get the care we need. Same goes for friends and family. There is a thin line between being sick and being sick and obnoxious. 3. Adjust your life to suit your needs. I was attending a big college campus when I got sick. I tried to keep going, but I eventually had to quit. It was just too much walking, standing, sitting, driving, and stress. All these things are triggers for me. I intend to go back once I find the right combination of meds to make that possible, but I realize that I may have to finish school online. 4. Find things that make you happy every day. Having a chonic illness is an emotional roller coaster. Some days you feel hopeful, other days you feel like your life is over. You need something to look forward to every single day. It should have nothing to do with your illness and it should not trigger symptoms.

Ambien worked for me for awhile, but the last few times I took it, it did nothing for me so I went back to Benadryl. When the Ambien did work it was great. Knocked me out quickly and I woke up feeling refreshed, not at all drowsy and no wierd side effects.

I went to urgent care several times because my primary wasn't helping me at the time. In my experience, urgent care doesn't help any more than the ER. They just reffered me back to my primary every time. They didn't even run tests beyond vitals. The doctors who helped me the most where my second primary, who was willing to order test after test and specialist after specialist until he figured me out, and my second cardiologist, who understands autonomic disorders a little more than most doctors, had experience with tilt table testing, and knew what drugs would help (Midodrine and beta blockers). These docs have their flaws and both have looked at me a little sideways at times, but at least now I know what is going on with me to some extent and I have meds that help. The key is finding docs that are knowledgable about autonimic disorders and willing to take on a challenging case. It wont be easy, and you will likely have to go through several docs until you find the right ones, but they are out there. Good luck.

I doubt the hospital will do anything. They will likely do only the necessary tests to make sure you are not going to die before you can get in to see your primary again, and those will probably not be the tests you are hoping to get. I say this from experience. I went to the ER twice. Once two years ago when all this started, I thought I was having a heart attack or stroke or something. They tested me (ekg, blood and urine, vitals, etc.) then sent me home with a referral to a psychologist. They thought I was having a panic attack. What a joke. The second was about 6 months later. I went to a different hospital this time. My heart rate was 180 and I was a mess. They did the same thing as before, only this time they gave me some Lorazapam to try to get my HR down and even though they couldn't get it below 100, they sent me home with a referral to my primary to get on thyroid meds. Believe me, the hospital docs won't care about what is going on with you or the cause. They just want to get you out of there. In my experience, Cardiologists aren't usually so hard to get into quickly, but it may be different where you live. Have you considered finding another Cardiologist? I know it's a pain to do that, but it might be worth it, especially if you think he is not doing enough for you. Remember, they work for you. If his interest isn't your best interest, it may be time to demonstrate our greatest power: the ability to give them the boot.