Notgivinup

Thanks everyone. Like I said I feel a little guilty feeling better, when I know some haven't felt good for ages. Although I've definitely put in my time! LOL

Ana_22, I had been on cymbalta for a good 7-8 months or more. But only 60mg. I've been on 90mg. now for about 10 days.

My symptoms were many, general flu like feelings. ALWAYS lightheaded,dizzy, nauseous, tired, legs felt like a thousand lbs. each. Cognitive dysfunction, bad, very forgetful, couldn't comprehend simple things. Heart rate was always high though not super high. ( 125 standing). Anxious, irritable. B/P low, then went to high, then all over the place. I stopped checking. Some palps, but not many. A little chest pain at times.

Did not want to get out of bed at all, and in fact could/would not many many days. I did manage to force myself to do the bare necessities. Feeling like death warmed over the whole time. On a couple of my worst days I got very angry, and forced myself to jog around the house. It was hard but I always felt a tiny bit better. I was never a fainter, so I didn't have that worry.

IDK, muscle pains are the only thing that still plague me, oh, and still not as much energy as as I use to have. I tire out quickly.

So that's about it I think.

But, I think I'm feeling much better, again almost normal. It's been quite a few days now. I don't know what to attribute it to. I'm still on singulair, zantac, tumeric, & 90mg. cymbalta.

I increased my cymbalta by 30mg. Maybe that's it? I still don't know if I have MCAD. Like I mentioned before, I haven't been tested for it. I'd like to go off the antihistamines to see if that's what's doing it, but after being sick for 3 years, I don't want to waste even one day. I'm scared to put myself back in a POTS hole.

But if I don't I'll never know. When would be a good time to make myself feel like crap? LOL.

I wish I could tell you. Bev at Dr. Grubb's prescribed provigil for me, but my insurance company denied me too.

No way I could afford it. I would like to try it for more energy.

When I'm in a POTS hole, everything is a struggle. I have to force myself to get out of bed. I have to force myself thru the day, all the while feeling like ****. It's extremely hard even putting my 5 year olds shoes on. I'm exausted, dizzy, nauseous, and can't think. It's a terrible way to live. I can't accept it. I won't.

Thank God, my latest meds seem to be working(antihistamines), but I still don't feel good or normal. I'm still very tired, slightly dizzy, just generally not right. But a LOT better than before. It gives me hope.

Glad you're feeling good!

Hmmm....well thanks everyone.

UPDATE. While I've been feeling better, I'm still not feeling "right". Hard to explain, just not healthy, & of course always tired. And muscle pain.

I still have tons of brain fog, & cannot for the life of me find a doctor in or around Youngstown, OHIO, who knows anything about MCAD. Grrrrrr.

I'm not quite sure how to describe the feeling in my abdominal area.

Almost every night as I lie in bed, and right before I fall asleep (my most relaxed state), I get this feeling. I NEVER feel it any other time. It's not painful at all, almost a bit ticklish & I can't help but think it is somehow a key or a piece of the puzzle for me.

I asked Bev, she kind of shrugged her shoulders. It started after I started on the MCAD antihistamines. I think.

I also have pretty bad colicky pains in the same area when I'm on my period. I have been scoped. Nothing was found of course.

Any ideas?

Firewatcher, you rock!

No offence Intuit.

Please understand, we are sick, we want answers, we have brain fog. We are tired of studying medical lingo. We are tired of being sick. We/I do appreciate your knowledge, but plain english like Firewatcher said would be helpful.

I've often wondered if we could all get around a large table, with a giant chalkboard (like on House) and brain storm together, if we couldn't "connect the dots" ourselves.

We might sit there for hours, or days, but I bet we could come up with some answers. After all, WHO cares more about us than US.

Wow Maggie, what an absolute gracious offer. I do get sad, and more symptomatic when it's cold & grey.

I'd LOVE to come. I haven't flown for at least 4 years. Not sure how it would effect me. Would this offer include my husband and our 5 year old? We don't have anyone we could leave him with, and I'd feel guilty leaving my husband home.

As I mentioned in an earlier post, I went to Cleveland Clinic last week for more autonomic testing. I had the blood volume and hemodynamic tests for ~2 hours, followed by the heart rate variability tests. Well, halfway into the blood volume and hemodynamics test, my restless legs "kicked" in. And I mean, the kicked in bad. I was fine for the first 45 minutes or so, but then it started to hit me. Unfortunately, this happened right at the beginning of the hemodynamics scan -- at a time in which I was told to lay still. I couldn't do it! No matter how important it was for me to keep still, my legs wouldn't let me. I was absolutely MISERABLE. For me, RLS is nothing like the "creepy, crawly" sensation I hear on commercials. It's feels like it's in the deep muscles or tendons. It's an achy, pulling tensing feeling that makes me crazy!

I have two questions:

1. Did I completely screw up my test results? (I asked the nurse, but she kept telling me "it is, what it is")

2. How many others here suffer from RLS?

By the way, I take requip for RLS, but only at night. I usually don't have problems during the day (ahem, except that day), but I've found that Adderall helps with daytime symptoms.

Hi, I have had RLS all my life. I mostly only get it at night. I take neurontin just before bed.

I had those same tests you did. Luckily for me my RLS didn't act up.

RLS is probably another reason I could never nap during the day. Have to have that neurontin in me.

Sorry I don't know if it messed up your tests, but I can sympathize with that terrible feeling.

Finally got on facebook. Maybe some of you could pm me? Right now I have 3 friends! Can I become a "fan" of dinet? Kari

I'm on facebook. I don't have very many friends either. It's hard to have/keep/make, friends when you've been sick for so long. I'll pm you, if you want to be my friend.

Why do I feel like a third grader LOL!

Thanks, you can be sure I will keep you all updated! Even if you're sick of hearing about it.

I will be 46. Was dx 3 years ago. Always healthy, till a virus and/or a car accident brought this on. Or maybe neither of those brought it on, who knows.

Anyway, I find that they tend to make me feel less 'jittery' at the end of the day. Apparewntly they have been shown to dminish the sympathetic response to standing - helpful for hyper patients in theory,

I take fish oil. Not sure if they help, but I'm taking them more for brain, stress, and for the reason you stated above.

I'm really happy to hear you are getting some relief! I hope it lasts. I have seen quite a few people on here taking singulair. I'm new to all of this and still on the diagnosis road but all sign's point to POTS. I was just wondering how singulair helps with POTS.

Thank you,

Jen

Well, I think, in my case it helps with what we suspect to be the underlying cause of my POTS, which is MCAD (mast cell activation disorder). In one word....Histamine.

Histamine is a potent vasodilator. I have not been tested for MCAD. But since I've been put on H1, H2, blockers and singulair, my main POTS symptoms have disappeared. I am on no other "POTS meds".

Now keep in mind, my body is weird. Almost every new med. has worked for me, but, only for a couple of weeks. I'm going on I think 7 days with the singulair added, and so far, so good. In another week or so I'll let you know.

I've had mice, and been bitten.

Beverly at Dr. Grubb's gave me script for singulair. Still working on the MCAD theory. I feel pretty normal again. Aside from some muscle pain. POTS symptoms are mostly gone.

Unlike last time I'm not getting my hopes up. It's yet to be seen, but the usual pattern has been 10 days to two weeks before a new med stops working. Very strange. I sure wish some doctor could explain this to me. I wish for too much. **sigh**

God, i'm so glad I don't get tremors like that girl. Mine are just in my stomach area. It's all internal, and more like quivering. It's always right before I start to fall asleep. In the whole stomach area. I usually just notice it, and let it pass. Then I fall asleep.

Wow, that is so weird. I feel better POTS wise when I have a cold too. It's like the body is busy with the cold virus, and doesn't have time to screw with your ANS. I don't know that's just my lame brains way of thinking about it.

On another note, my GP, who knows nothing about POTS, suggested I try Pseudoephedrine. I haven't. He is trying to think outside of the box. It will raise bp. But I was afraid of the heart rate increase. He also told me not to worry when my bp was high. (It is labile now). He gave me a number to watch for, and if it got that high then I should worry. But of course my POTS brain won't let me remember the number! Sorry.

Yes - It's so frustrating! I feel so tired, and yet I just can't fall asleep. Then I end up going to bed early, asleep by 7 or so, and have a poor night's sleep with a lot of tossing/turning/potty runs. I'm awake again by 4 or 5, but make myself stay in bed until 6. It seems like if I could take a daytime nap, I could stay up later at night and perhaps sleep in later. What I'd give for a solid 9 hours of sleep!

I'm not sure about sleep apnea, and I don't think I'd sleep at all with little electrodes stuck to my body in a strange bed and room. Anyone done this?

Also, Notgivinup, I have the same experience with pain meds. I take 1/2 a Percocet on some days because my pain is so bad, and it does make my symptoms seem better, and gives me a little more energy.

Good sleep to us all!

Jana

Potsgirl, I'd like to ask one of my many doctors for a low dose of vicodin. But how can I do that without looking like a drug seeker? I have pain, but, of course without a real physical cause for it, I don't think they'd give it to me. KWIM? POTS causes pain, but x-rays don't show anything.

There are dozens of different types of magnesium depending on how it is bound and delivered. Some are powders like Natural Calm ( http://www.petergillham.com/product-line/p...atural-calm.php ) I used this for years and felt wonderful on it. What I like is that it was easy to titrate the dose since it was a powder that you mixed with water or juice ... I could have a little more or less depending on how I was feeling.

However, when my palpitations got "annoying" again my cardiologist recommended I take Slo-Mag ( http://www.slowmag.com/ ) These are timed release magnesium and they really did the trick. I've been taking slo-mag for a year now and much less heart palpitations.

Good luck finding a balance that works well for you.

I take slow mag too. Don't know if it does anything, but know magnesium is important.

beta blockers dont work because norepinephrine is an alpha and beta agonist and ist the alpha constriction that causes most of the symptoms in hyper POTS (in theory). By blockin beta alone you are allowing alpha constriction to occur unapposed.

Ahhh, I see now. Thanks Rama. Your knowledge never ceases to impress me!

So again, in theory, could one raise her dose of klonapin, with docs approval of course, to dampen down some of the feelings of excess norepenephrine?

Janey, I agree I LOVE Erik's "way".

I tend to have the hyperadrenergic form, but for probably the last 10 years, no matter how tired I am, my body will not nap in the daytime. It's like when I get up in the morning, my "switch" is turned on. I can drag and drag all day from a bad night's sleep, but not be able to take a nap. Then, thankfully, XANAX turns that switch off at night. And so on, everyday. I mean I remember for the 30 years before I was able to nap if I was tired, but not for 10 years now.

I can't nap either. The ONLY way is if I take something strong like, klonapin AND a vicodin. When I had a kidney stone removed 2 years ago, I was prescribed vicodin. Besides being able to nap. I also felt 98.9% better (POTS wise) on vicodin!

If I wasn't afraid of addiction, I'd probably just take one vicodin a day and be good to go. Of course why they work I don't know. And then there is the issue of building up tolerance and needing more, and more. Plus no doctor would prescribe them. I do have a lot of pain. Maybe I should just ask. Nah, I doubt anyone would give them to me.

Well, for those of us labeled Hyper-adrenergic, it means that our "normal" morning surge will be greatly exaggerated! I know mine is. My HR will shoot from the 40's well into the 110-130's within seconds of being upright and stay that way for several hours if I don't take my Beta Blocker. My Diastolic BP will also go up by 20-40 mm/hg within a minute, my Systolic is slower to rise, but will go up to 120-130 within the hour. This "normal" rise in HR and BP is called the Morning Heart Attack Zone and most heart attacks happen then. For those with Cardiac Diseases, that morning surge can be too much on the system. Norepinephrine is one of the waking-up hormones and is supposed to help the body rev up for the day. I REALLY rev....

Hmmm, Firewatcher I wonder why beta blockers don't help me? I've tried 3 different ones. I get depressed, and don't really feel any better. Also Dr. Grubb's work says bb shouldn't be use in the hyper kind of POTS. Or should be used cautiously is what I think he says.