jbrian00

Hi James,

It was a nice offer, but I wasn't able to open it. I don't want to download PP since PC is straining already.

Oh well!

Found it on youtube so you don't need to download any software! See my original post here. Let me know if it works for you.

Yes I've had a noticeable increase in anxiety since I've been exhibiting POTSy symptoms. I think most of it is health anxiety though. I have had social anxiety, and it's difficult to say if POTS has actually made it worse or not, but it certainly doesn't help it. Meds have helped a lot with my anxiety. I tried going off of them, and was so anxious I couldn't leave the house, and was having heart surges and shaking (I think med-withdrawal-induced panic attacks).

Preventing the reuptake of norepinephrine does artificially make more of it available to the body, even though your norepinephrine levels do not actually change. Your body thinks it has more, since the NET protein is suppressed by Cymbalta. Just because more is available for use in the body does not necessarily mean that more will spillover unnecessarily into the synaptic nerve causing the adrenaline effect (i.e. high bp and hr). My hypothesis is simply that the spillover will be less (although not totally alleviated) by Cymbalta. In addition, since more norepinephrine is available for use, it will help replenish the norepinephrine that is unnecessarily spilling over into the synaptic nerve. I hope that makes sense to you.

By the way you also asked about dosage. I was taking 30mg, and that did help a lot. However, my PCP is trying me at 60mg (30mg 2x a day) to see how I will do on that. A dose of 60mg, as he told me, would be beneficial for people who are obsessed with their health or the way they feel. He said I am really in tune to my health and focus a lot on it (cause I don't feel well), which could be considered an obsessive compulsive habit. 60mg of Cymbalta can help with compulsively worrying about your health.

were you able to view it ok?

Cymbalta works on the reuptake of serotonin and norepinephrine neurotransmitters, while regular SSRIs only prevent reuptake of serotonin (primarily). Norepinephrine is a vasoconstrictor (so it can raise bp) and it is also a hormone that speeds up the heart rate in the "fight or flight" response. One possible cause of POTS is a deficiency in the norepinephrine electron transporter (NET) protein, causing excess norepinephrine to spill over into the synaptic nerve, causing an increase in heart rate upon standing or postural changes. Cymbalta, as to my understanding, overrides this NET protein in order to prevent reuptake, so the excess spillover is reduced.

While on cymbalta I have noticed an improvement in the severerity of how high my heart rate would jump after a postural change. It also helps with anxiety/depression, which can exacerbate symptoms.

Anyway, this is my hypothesis on why cymbalta can be helpful.

I've had a similar problem getting medical records (which were coming from a different state). I asked my doc's office to fax my release forms to my previous docs, and then called the previous docs if they would please fax back my records as soon as possible. Most offices will send records through the mail (my doc's office does it every 3 weeks), so if you need it sooner it's probably wise to pressure them to fax them, saying you need them right away. I have an appt tomorrow and as of yesterday was told my doc still did not have my records, so I called my previous doc's office and was told she would fax them right now, so hopefully the receptionists will be helpful about that if you go that route.

James

I've come across this file that I think can help everyone here when they are feeling down or need an emotional "pick-me-up" to appreciate life. Let me know what you think of it:

Visit My Website

FYI it is a Microsoft PowerPoint file

James

if you don't have a powerpoint viewer you can see it here (turn up your volume):

http://www.youtube.com/watch?v=wXfsDIIMLS4

Oh I've had those during my "heart surge" episodes I guess is what I call them, where my heart will randomly race ~160bpm, even if just relaxing on the couch. I will start shaking uncontrollably. Not sure if it is dysautonomia causing the shaking or if it's my anxiety that my heart is racing so fast. Other than those episodes, though, I don't have these tremors. And they have stopped after taking Klonopin and Cymbalta.

James

I'm just interested in what type of tremors you are referring to?

Just wanted to lend a note of support. I struggle with this too - especially back when I didn't know I even had POTS and that it could cause chest pain. but yes - is there a wolf or isn't there? A hard decision. I guess it's better safe than sorry, but given insurance issues, the ambulance/ER can be a bit of a crazy solution! Perhaps a middle ground would be to get thee to an emergency room and then sit outside - if you feel worse, you go in, if it passes, you go home!

I know it sounds crazy, but hey, whatever works..

I've done that several times before when I first developed POTS symptoms and was having panic attacks all the time. My stepmom would drive me and we would sit outside the ER. Most of the time it would pass and we would go home, but simply being near an ER can bring relief. Just don't try to drive yourself if you are too distraught to drive.

I feel for you. I've had a couple ER visits because I experienced new and unusual symptoms. Once I thought I was having a stroke, combined with high bp. The other was a very rapid hr during exercise which freaked the **** out of me. The first time I woke up shaking uncontrollably my parents took me to the ER. Anytime something new or something more severe than normal happens, it is natural to panic, and the panicking, unfortunately unavoidable at least for me, makes things worse. And then you spend an absurdly expensive ride in the ambulance to the ER, just to have the ER doc pop a pill, give you a pamphlet on anxiety, and send you on your way. But my motto is that it's always better to be safe than sorry, especially with symptoms that in your case can be signs of a heart attack or something. And it is so difficult to know whether your symptoms are "benign" dysautonomic symptoms or something severe that requires urgent medical attention, especially for symptoms that you've never had or are more severe than normal. Hopefully you will come across the right mix of medications that will help prevent symptoms from becoming severe like that.

I checked out those links. Do you know if a fountain would create negative ions?

I am one of the people (they mentioned) that feels much improved after a thunder storm. I am setting up the water fountain- I have stored.

A little water fountain in your home is not gonna create negative ions. You need something like niagara falls lol Or of course a negative ion generator.

If I recall correctly, and I will check my old appliance file;

I had purchased two large Ion Therapy units about 12 years ago when they first came out. I was hopeful it would help me.

True I too feel better after a thunderstorm but did not know that a by product of these units was ozone or a ozone type gas. I knew something was wrong after a week because I started to have trouble breathing. Like asthma, like when I was a flight attendant and had trouble at 38,000 feet.

So, read the information carefully.

I had to send those expensive units back minus a hefty re-stocking charge.

good health wishes,

tearose

Yes, you do have to be careful and look for units that do not produce ozone as a byproduct (or at least a unit well below the FDA's ozone emission threshold). Not all ionizers produce ozone or emit enough ozone to cause adverse symptoms like you mentioned.

Actually I first learned about negative ions after researching air purification systems, many of which contain ionizers in them. After reading about some health claims, I decided to look into it a little deeper to see if there was some science behind it.

There are some reputable sources for the positive effects of negative ions, but you have to keep in mind that research has been limited on the subject, and the clinical trials that have been done have been aimed at treatment for Seasonal Affectation Disorder (SAD). it seems like the Japanese have studied the subject a bit more in depth than here in the US.

Some sources I've come across include:

http://www.webmd.com/balance/features/nega...-positive-vibes

http://www.cet.org/ is a non-profit organization that has conducted clinical trials using negative ions

http://ajp.psychiatryonline.org/cgi/content/full/163/12/2126 contains some details of clinical trials

http://sciencelinks.jp/j-east/article/2006...105A0879383.php contains a study in Japan about negative ions and autonomic nervous system balance

http://www.static-sol.com/library/articles...n%20effects.htm -- effects of negative ions on Serotonin

http://www.negativeionsinformation.org/ -- general information about negative ions

http://www.kiflow.com/info/ions.html -- sells bracelets but quotes some studies

http://www.therichwaybiomat.com/negative-ions.html -- this site sells negative ion "biomats" but they quote studies that have been performed. Most interesting is "Dr. Tanaka (a scientist in Japan) found that negative ions control the balance in the autonomic nervous system between the insulin and adrenal functions. This provides strong resistance to diseases."

http://www.nutritionreview.org/library/negative.ions.html -- effect on Serotonin and catecholamine levels

http://www.negativeiongenerators.com/negat...nsresearch.html

I've only had a brief look at negative ion therapy, but there does seem to be some sound science behind it. But yes, I would agree that companies do inflate their claims quite a bit in order to sell their products.

James

Is anyone here familiar with negative ion therapy? According to what I've read, negative ions can help balance the autonomic nervous system. Can anyone comment about this?

James

I have tried several dosages of both Zoloft and Cymbalta over the last 3 years since I became symptomatic. Sometimes you have to take side effects into effect. For example, while on 100mg Zoloft or 60mg Cymbalta, I was yawning like crazy and was tired all the time. I was also taking klonopin, though, to add to the mess. But actually, I felt the best when I was off the klonopin and taking 30mg of Cymbalta. For me there was no need to take higher than 30mg of cymbalta. High doses are not always better.

James

Yeah it's sad that in most cases, unless we go to a specialist, we have more knowledge than our docs concerning POTS or other forms of dysautnomia!!

Have any of you been tested for parasites? I've read that according to the center for disease control they are a major problem, even in the US and elsewhere. Some can enter your brain or heart and start chewing on brain neurons. Unfortunately tests for parasites do not normally detect brain parasites and only recognize a small percentage of known parasites, and could give false positive results. And docs are generally not concerned or even unaware of them, so they likely would go undetected.

Just a thought.

Interesting you said eye straining. I'm thinking the same thing for me since I'm an online student I'm looking at the computer a lot, and my eyes feel tried and strained from it. I'm gonna try out of a pair of anti-glare glasses to see if that cuts down on my eye strain. I also have a great pair of sunglasses for the sun.

Thanks

Does anyone have any advice on what has helped you with headaches/head tensions symptoms in your head. Mine seem to be chronic now, are worse when walking around in public (along with the heat), and less severe when lying in bed. Do you think tylenol or anything would be helpful at all?

I'm keeping up on my 64oz of water a day but that doesn't seem to help the headache symptoms.

Any advice is pleasantly welcomed.

James

Im Sheba, guys and Im from Miami Florida 33 years old. My biggest POTS issues first off is the tachycardia and some chest pains like a tingling irritation, also some body aches. I also have some panic issues lately mostly from fear. My biggest problem is accepting these new life changes and Im putting alot of stress on my body. I appreciate the prayers and the responses. The reason I feel scared is because Inoticed my heart rate is really slow at night when resting and Im scared to sleep at night. This so unreal to me and I know I have to just get on with my life but Im sort of stuck. How can I adjust to this?

I also notice my heart rate slows down at night. How low are we talking here? Mine goes down into the 50s when I am lying in bed. I have been woken up several times in the middle of the night with a thumping heart caused by bradycardia (too low of a heart rate). It scared me a little at first, too, but I've learned that if I elevate the top portion of my body through use of pillows my heart rate will not dip down so low as to cause problems like that. You can see my other post about it.

James

WOW! that is good news.

ESPECIALLY since you have been showing progress.

Many of us have the hyper adrenergic stuff and realize, we always have it thus SOMETHING sets it off and we get worse. After 18 years I believe this but the first 8 years I had this I was told it was CFS !!! Also realized I had this as a little kid and always had horrible physical tolerance.

But since yours came on suddenly *you are the 80 per cent group and that has better chance for recovery! YAY. Glad your vanderbilt experience was good and much more productive than the last doctor visit.

I look forward to seeing your recovery and getting back into your dancing!! The fact your exercise tolerance is improving so quickly is a HUGE sign too. A great positive sign.

:)

I'm sorry what is this 80% group that has a better chance for recovery?

That sounds like great news! Especially about the getting better part. I hope it comes sooner than later.

James

I was just wondering if anyone else has noticed an increase in heart rate right after coughing, choking or sneezing. I don't know if it is a normal response or not. Just something I've noticed.

I have the same thing, and think I figured out what is causing it for me...but you may want to check to see if the same is happening with you. I would wake up in the middle of the night with a thumping, forcefully beating heart. I caught one episode with my hr watch and it was 48bpm. So, for me, it happens when I have bradycardia (really low heart rate) when I'm sleeping. I've been checking my hr upon lying in bed before falling asleep, and lately it has been in the 50's. So when I'm sleeping, my heart rate naturally lowers further, and if it gets too low, it will pound to try and get the hr up again. Waking up and rolling over or sitting up in bed alleviate my attacks, because the change in position causes my hr to go up.

So, I would advise you measuring your pulse right when you are awakened, to see if it is really slow. I have found that elevating the head of my using pillows and kinda propping the upper part of my body up when I sleep prevents my heart rate from dipping down so low and helps a lot. So, you could try that and see if that helps you. I just have a tendency to have a much lower pulse around bedtime which turns brady when lying flat in bed.

Hope this helps you,

James

I've actually tried to internet dating thing myself since I don't get out too much to meet people. Jesse you bring up a good point about guys suffering this, as we are the minority. I once dated this girl that I liked an I thought she liked me (at least she said she did)...I didn't even mentioned POTS to her, but she did notice my hr being higher than usual and I just told her my heart beats faster than most people's or something like that. Anyway, dating was difficult because she was really looking for a guy who had a wild side as well as a sweet side. I have the sweet, but can't physically do wild

I truly believe though if you find someone who really likes you for who you are, and truly cares about you as a person, then having POTS or any other illness for that matter shouldn't matter. I'm long distantly "dating" someone now, and I tried to tell her about POTS and how I am suffering. She said she didn't care what I had, she'll love me either way. How much of that will be seen in practice, I can't say yet, but that's the attitude you should be looking for. If you come across someone who isn't understanding or doesn't want to deal with it, then that's not the person you should be with anyway.

By the way, any cute girls in northwest IL near IA border (near the Quad Cities) who wants a date?

I watched an add for Cymblata a few nights ago, and remembered that you mentioned having severe symptoms after starting and stopping it, though overall (after starting it) you seemed helped by it. The TV add mentioned that Cymblata may cause "blacking out or fainting upon standing". That's so POTS, and it's a really wierd side-effect for a med. Maybe you were pre-disposed somehow to POTS, and the medication brought the disease to the forefront?

Good luck finding answers. I hope your appt goes well tomorrow.

Speaking of being POTS, try reading a cymbalta pamphlet from walmart (my pharmacy). This medicine may cause dizziness, lightheadedness, or fainting. Alcohol, hot weather, exercise, and fever can increase these effects. To prevent them, sit up or stand up slowly, especially in the morning. Also, sit or lie down at the first sign of dizziness, lightheadedness, or weakness. In form your doctor if you have ....... low blood sodium levels. Use of this medicine is not recommended if you have kidney problems.

Lexapro has a statement that SSRI use has contributed to clinically significant hyptonatremia (low blood sodium levels).

Sound even more like POTS? Hmmmm...makes me not want to take Cymbalta anymore And my doc said he thought upping my dosage might be helpful