RichGotsPots Posted January 20, 2012 Report Posted January 20, 2012 I'm really tired of doctors and my family thinking that I'm ill because of anxiety. I think I do have anxiety but it because I'm ill not the other way around. Just like a heart attack patient would have anxiety or anyone else with a major illness would feel.There is a 1 difference between POTS and other illnesses, in that this illness affect our Panic response system (our ANS). So to everyone else it seems like I'm having some kind of panic attack. Frustrating to say the least ugh. I don't make panic expressions on my face though and my sysmptoms all happen progressively, but no one listens..I was looking up beta-adrenergic hypersensitivity that I saw on one forum members signature and it lead me to a book on Anxiety http://books.google.com/books?id=Lx9hf-3ZJCQC&pg=PA150&lpg=PA150&dq=beta-adrenergic+hypersensitivity&source=bl&ots=WfurAvhM9g&sig=T8sP1FedlZNSyUk67eDCeVNWFnw&hl=en&sa=X&ei=U5wZT8qlG8T00gHpg6DOCw&ved=0CE0Q6AEwBA#v=onepage&q=beta-adrenergic%20hypersensitivity&f=falseIt's an interesting book, because to summarize, when they talk about beta-adrenegic hypersensitivity they say they tested lowering this hypersensitivity with a beta-blocker before they provoke the panic attack. What they found was that even when they lowered the heart rate with the beta-blocker all of the patients still reported panic attacks. So they concluded that heart rate doesn't seem to regulate the attack and so beta blockers were not helping.For me personally I don't think my heart rate peed would help all of my symptoms if it was lowered to a normal rate. So far I haven't tried any beta-blockers or any other heart lowering meds because of my breathing issues.. But my heart rate usually does lower at night (for example during the day laying I could be 95-105 bpm but at night I can be 80-85 bpm laying), but my symptoms actually seem worse at night, I get very fatigued and have trouble eating a normal meal especially flour based foods ( I only eat salad at night)...Has any panic attack meds helped anyone with their POTS symptoms? I've see that a bunch of people are on some anxiety or SSRI meds. I'm worried to try them because they have a laundry list of side effects and all I need is more symptoms right now :-/I will say this, when my breathing issues are bad, like ER bad, I do panic and that can make things worse. But the breathing issues never come after a panic, always before. But also I think my POTS makes me more sensitive than I already am and when I'm really ill it's hard to hole back the emotions... Quote
corina Posted January 20, 2012 Report Posted January 20, 2012 hi rich,the reason i'm on an ssri is because it regulates my heartrate upon standing. when i don't take it my hr goes through the roof on standing, when on 10mg seroxat (paxil) it goes up about 40 beats and when on 20mg it goes up just a few beats (necessary to get bp up). so this has nothing to do with panic attacks but with the "messengers" (if i remember well, but my memory is really bad so i'm not the one to explain )also my hr always lowers at night (starts lowering in the evening) and i'm mostly in my 50's during the night or 40's. my cardio doesn't worry about that for now. now and then my hr drops into low 30's which makes it impossible to even sit up and we're not sure why this happens but as it doesn't happen on a regular base i let it pass.hope this helps!corina Quote
Lemons2lemonade Posted January 20, 2012 Report Posted January 20, 2012 Every medication has side effects :/. I was convinced that while taking an ssri i was going to flip out and kill myself or something. But it wasn't like that at all. Something else to consider is that i think pots has a lot of side effects! My favorite one is the flornief side effects: diabetes, congestive heart failure, psychosis, and blood clots--yea fun right?! Quote
icesktr189 Posted January 20, 2012 Report Posted January 20, 2012 I have wrote a lot about SSRIs and while I did have a hard time in the beginning, after a couple months I had NO side effects. It got me my life back by reducing POTS and OI symptoms. Quote
kayjay Posted January 20, 2012 Report Posted January 20, 2012 Beta blockers can block some of the adrenal surges- You can try a short acting one. Mayo clinic switched mine to nadolol ( a small dose 20 mgs) and once I got used to it it really helped me.Lexapro was horrible for me. Now I take cymbalta and seem to do ok with that.I completely relate to your story. I think many doctors either thought I was on street drugs or had an anxiety problem.... it is anxiety but it is caused by your body not a mental issue! I was given ativan in an ER once and when they realized it did nothing to lower my heart rate I ended up admitted to the hospital.If you do decide to give medication a try consider that it may take quite awhile for your body to adjust and you may want to start with a very low dose. Quote
kayjay Posted January 20, 2012 Report Posted January 20, 2012 Goodness, I just read your post more carefully. Shortness of breath was one of my worst problems. I was told I had asthma ( don't), I would often feel like I was going to suffocate. Beta blockers made this better for me ... not worse. I did see a pulmonary specialist and my lungs are fine. My breathing issues were Dysautonomia related. You may find that medication helps you.I am very sorry that you have this symptom. It is awful! Quote
Katybug Posted January 21, 2012 Report Posted January 21, 2012 Rich,I take metoprolol and it has slightly lowered my HR but it has not decreased the adrenaline surges. I was not able to take Lexapro or Paxil because they made my POTS symptoms worse. I was just saying in another post that I had bronchitis-induced asthma once and I am soooo glad to never have had it again. I found that feeling of my airways closing and not being able to get any air much worse (scarier) than the feelings I get with POTS (even that point right before you pass out). So, I can totally understand not wanting to make your breathing problems any worse. And, yes, how could you possibly not panick to some degree, if you are having POTS and breathing problems at the same time!! That would be horrible!! Hang in there,Katie Quote
potsyturvy Posted January 21, 2012 Report Posted January 21, 2012 I didn't start having panic attacks until after I had been on a beta blocker for a few months. Mine started after a minor surgery. I had them non-stop, from when I first woke up in the morning to when I fell asleep at night. I have had a combo of things that I think helped. I am taking a SSRI, Celexa, which has helped. The first two or three weeks on it were pretty much miserable (though I was so miserable already that I guess it didn't make too much difference), but after that I don't feel like I have any side effects from it. I also had really low vitamin D, and after being on some mega-doses of it for a few months, my panic attacks have gotten a whole lot better. I agree with you that it is tiring that doctors want to act like all our health problems are caused by anxiety, especially when they aren't even willing to test for medical causes of anxiety (like vitamin D deficiency). Quote
ramakentesh Posted January 21, 2012 Report Posted January 21, 2012 POTS itself causes anxiety - through sympathetic overactivity and through postural hypocapnia. Even changes in blood flow the heart can result in feelings of impending doom. Since anxiety, panic and POTS all involve the same branch of the autonomic system your body can interpret it in different ways.I never experienced anxiety with POTS until I took an alpha agonist but I dont know whether this was random or causal. i do know that my specialist told me that the anxious feeling is from the body attemptiong to re-regulate blood flow by using epinephrine as a last ditch attempt. problem was that epinephrine vasodilates through beta 2 receptors, often making you feel worse. Quote
RichGotsPots Posted January 21, 2012 Author Report Posted January 21, 2012 I'm just very afraid to gamble with mt breathing. One wrong med and my breathing could go from really bad to really really bad. So far 3 pulmonary function test say I have mild asthma, getting a 4th in 2 weeks. Did my mild asthma go to severe asthma out of nowhere and if so beta blockers have a contradiction with asthma. On the other hand if I have mild asthma still and just the POTS is making my breathing worse it could help. Meanwhile I have my Mom putting me down every second telling me POTS and breathing is all in my head because of anxiety.I've read that even some anxiety meds are not good for breathing like Ativan it says, "Severe respiratory failure – Benzodiazepines, including lorazepam, may depress central nervous system respiratory drive and are contraindicated in severe respiratory failure. An example would be the inappropriate use to relieve anxiety associated with acute severe asthma. The anxiolytic effects may also be detrimental to a patient's willingness and ability to fight for breath. However, if mechanical ventilation becomes necessary, lorazepam may be used to facilitate deep sedation." that doesn't sound good for my breathing Quote
RichGotsPots Posted January 21, 2012 Author Report Posted January 21, 2012 @KayjayWhen and how were you dx with asthma and then how did you find out you dont have it? did you ever take asthma meds? How long did it take for the beta-blocker to work for the breathing and which one did you use?Thanks, Quote
potsgirl Posted January 21, 2012 Report Posted January 21, 2012 Rich,Do you use any inhalers? I just to use two of them - one for everyday, one for asthma attacks. They were very helpful. Sorry I can't think of the names of the meds right now.I also take Paxil (15 mg) to help with my anxiety and the few panic attacks I had many years ago. It has helped me. Perhaps if your doctor approves you could start on a very low dose of an SSRI and see what happen? I only take 10-15 mg of Paxil, which is about half of the usual dosage.Good luck with whatever you decide! Quote
E246 Posted January 21, 2012 Report Posted January 21, 2012 My surges that had started to last for hours have been stopped with florinef. If get a small surge now 5mg valium has really helped. I used this with some relief before the florinef. Some Beta blocker will make breathing problems worse - Propranolol whereas others eg bisopromol don't act on the this. My next move was to take SSRi's. this is the other medication to work on the adrenal release. Quote
kayjay Posted January 21, 2012 Report Posted January 21, 2012 @ Rich... I was sick for years and didn't know why. Very short of breath walking up stairs. I would wake up at night gasping for air and often just felt like I couldn't get enough air. I could barely talk on the phone without someone asking me if I had been running.I was diagnosed with asthma by 2 allergists ( and one other that said i had "reactive airway disease"). Finally a cardiologist sent me to a pulmonary doc who did extensive testing. He told me I did not have asthma and sent me to Johns Hopkins.The allergists put me on singular, advair, and gave me an inhaler. None of it helped although controlling allergies did give me some limited relief. Allergies can make POTS worse.I did not get any real breathing relief until I was on POTS meds. The beta blocker was first. An alpha/beta blocker combo was awful. I know everyone is different and a beta like metropolol is shorter acting than what I am currently on. I started with metropolol before I went to mayo clinic- they changed my meds to nadolol and the lexapro to cymbalta. Two other bits of info about me, i think my shortness of breath was always related to my high heart rate. i found out when I was hospitalized that my heart rate was over 170 just when I brushed my teeth ( nurses got very excited ). Also 4 times I tested positive for an adrenal gland tumor called Pheochomacytoma. Johns Hopkins sent me to the National Institutes of Heath and I do NOT have this tumor. I just was producing catechomlomines ( no idea how to spell this) at crazy high levels.It may be worth carefully trying a short acting beta if you thing your shortness of breath may be related to your heart rate or how your heart is beating. I was also put on Klonopin ( My doctor at mayo is going to switch this out). Some of these meds seem counter-intuitive, however if your lungs are healthy, your heart is healthy and POTS is the problem you may have some relief. Feel free to PM me and ask me whatever. I will never forget how scary it is to be gasping for air and I hope you find something that helps you! Quote
hilbiligrl Posted January 21, 2012 Report Posted January 21, 2012 Ok... im no expert here, and im not sure if anything i say will help..... but i've had the severe breathing difficulties for 9 years now, that have landed me in the er many times, along with severe weakness/comatose state..... but always, that breathing was just.... unreal.... i literally would pant like a dog to be able to breath even a tad......along with diagnoses below, i do feel i would fall under the hyper pots catagory, but for some reason, i feel like the hyperpots is not my main issue. Being from the pharmacy field...... i have tried almost every ssri, snri and tri cylcic out there, due to having anxiety/social anxiety/easliy overwhelmed since i was a child. Only one of those meds worked for a short period of time for my 'generalized anxiety/onset adult panic attacks'...... my panic never comes until after these either dys or mcad attacks happen (that's what i've kinda keyed mine down too), when all the sudden my breathing would go from difficult to severe hard time. Lexapro worked well for me with the general anxiety, overwhelming feelings, etc. But i was prescribed that about 6 years before i was diagnosed by a different doc. And it never really helped or hurt the breathing issues.......for me..... and we are all different...... but for me, the ssri's, snri's and tri cyclics never worked.... they would make me worse.... severely worse on many levels.... i just can't handle them, my body and mind just can't handle them..... but once i was put on klonopin (the mega benzo... ) I did see some relief..... you can see my meds and dosage below in my signature. At the same time I started Klonopin, i was also piecing together that i have mcad as well. So, while the Klonopin made a huge difference for handling this disease and helping with a few symptoms, it never made anything worse, ever. Lots of things calmed some, but it's not a cure all, as nothing is anyways for folks like us. I've been on the klonopin for almost a year now and since it has worked so well with anxiety and panic for me in dealing with this disease, we have found it an imperative part of my treatment. Xanax and ativan do not work well on me..... valium does, but klonopin for me was the best option.Once I started on the MCAD regimen....... 2 things i have pieced together... 1. i no longer have the breathing issues (well, very rarely..... so i do have combivent just in case..... as all my pulmonary function tests were always perfectly fine) but, in addition to no longer having difficulty breathing everyday, but i noticed that my accute attacks of not being able to breathe and that comatose state thing, have almost stopped completely. and 2. my many years of urination of over 40 times a day came to a halt too (but i do have flare ups)......so, I contribute (at this time with what knowledge i have) the breathing issues to the mcad. But i do think the benzo has helped too. Im very scared to try ANYTHING, but at this point i am very open to trying ANYTHING....... in small doses at first of course.Right now i have added ashgwandha to my regimen for 2 weeks now and have noticed it makes me calmer and i can handle stress even better, as it helps with adrenal fatigue..... but with everything can come side effects, and i have read up on a few with it.... so im still in experiment phase with it.hope something in all this mess helps!!! it can be a long process in piecing things together and finding out what works for you..... not one of us will ever have the same med regimen, because we all are chemically different..... it's been a year and half since they found out what was wrong with me after almost 8-9 years of non treatment of anykind and no one getting to the bottom of things..... but in the last year and half on this board, i have pieced alot of into together in helping me find my regimen.... im sure it will always need changing and additions..... as im still hangin in ther around 5 bedridden days a week.....good luck on your journey through all of this!!! you are not alone!!tennille Quote
Clairefmartin Posted January 22, 2012 Report Posted January 22, 2012 Print these out and bring em to the docs!http://jnnp.bmj.com/content/80/3/339/reply#jnnp_el_4620Dr. Raj differentiates between POTS and anxiety. Quote
anna Posted January 22, 2012 Report Posted January 22, 2012 Oh and add this to the anxiety dater as well! http://www.ncbi.nlm.nih.gov/pubmed/18977825 Quote
E246 Posted January 22, 2012 Report Posted January 22, 2012 Great Link Claire, there is an article free in the footnotes about the kidneys renin/aldersterone etc. I have been thinking for a while that this is all linked to kidneys. Still no answers but a number of possibilities. Quote
bellgirl Posted January 22, 2012 Report Posted January 22, 2012 My goodness, this is like reading a book. A good one, too, because we can always get ideas from others in our own treatment, but everyone is different, and you need to find a doctor you can work with. I was diagnosed with asthma about 26 years ago, was on 5 meds at the time, had severe allergies, and desensitization shots for 4 years. I only use an inhaler now when I need it, but I too, was somewhat concerned about being on a beta blocker, because of my asthma, and sleep apnea, which was just diagnosed. At first I was on atenolol, but it decreased my heart rate and blood pressure, too much. It is short acting with a half life of 6 hours. I also take Lorsartan/HCT for my B/P. When I was between beta blockers, I had a horrible panic attack and was immediately put on Bystolic, which is a new beta blocker that has a 12 hour half life. It is working very well for me. I made sure, being a nurse, that I would only be put on a cardioselective beta blocker, so that I wouldn't have breathing problems! It was a risk I was willing to take, because I was so tremulous, and symptomatic all the time. I felt like the road runner...lol. I also take clonazepam to sleep, and have a Cpap machine for my sleep apnea. I only have trouble with my asthma after I am sick with a respiratory virus, now, so I am much better. Now I wonder about the asthma diagnosis, but my sleep apnea doctor says, if I was wheezing, that I did have asthma Quote
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