CarmelRob

Yes, I've tried other Atypical Anti-psychotics before. Seroquel, Risperdal, and Abilify didn't work so well with me. Seroquel made me too tired during the day time however I could try only taking it at night. Risperdal raised my prolactin levels too high and Abilify made me agitated and nervous. Like I said before, Zyprexa takes away the GI problems I would otherwise experience with SSRIs alone. Pretty weird since I don't hear many other people talk about that. Does Celexa have a bad discontinuation withdrawal even though it has a pretty long half-life(35 hours)? The last time I was on Celexa I was in the hospital and the doctors put me on more than I could handle(30 mg). I'm thinking of switching from 12.5 mg Zoloft to like 5 mg of Celexa. I hate playing around with medications. My dream would be to find a rock solid regiment that works and that I would not have to change!

Hi. My name is Robert, I'm 29, and I haven't posted on DINET for a couple of years now but I'd like to try to get back into the community if that's alright. I have an extremely disabling form of hyperadrenergic POTS which has made it impossible for me to live a normal life. On top of that I've suffered from major Depression, OCD, and severe gastro-intestinal disorders which I believe is related to the POTS/CFS. My current medication regiment is: 12.5 mg of Zoloft 2.5 mg of Zyprexa BID .5 mg of Ativan TID 10 mg of Nadolol(Beta-Blocker) 2 Colace capsules I've found that the Zyprexa and Zoloft sort of balance each other out since one drug antagonizes serotonin while another agonizes it. If I miss my Zyprexa, after a couple of days I soon start to get unimaginable pain in my abdomen and stop having bowel movements! I believe this is due to my super sensitivity to Zoloft as well as other SSRIs. However, if I go back on Zyprexa, the pain goes away and I start having BMs again, thankfully. There is, unfortunately a dark side to Zyprexa, and I can only describe it as an awful "EMPTINESS" in the head, what feels like a total lack of blood flow to the brain. For this reason, you will often see me wearing a hat to more effectively heat up my head. Sometimes, though, the "EMPTINESS" is unbearable and I just HAVE to miss a dose of Zyprexa to set things right again. So, to sum it up, my current solution is to take Zyprexa until I can't bear the "EMPTY" feeling anymore and then miss a couple of doses to put me on track again. I know this sounds unprofessional, irregular, but I just can't come up with an alternative. Can anybody help me with these two topics: 1.) I'm thinking of changing over from Zoloft to Celexa in hopes that I don't have to rely as much on Zyprexa to take care of the associated GI problems I get from SSRIs. Is Celexa supposed to have less side effects than the other SSRIs? 2.) Does anybody else get the "EMPTY" feeling in their head or am I the only one? It's so hard to describe the "EMPTY" feeling to doctors. Thank you so much for all the love and support! -Robert

For those who are on Celexa or Lexapro I was wondering what regimen works for their POTS and if they ever get burning in the head? I've tried all of the SSRIs and SNRIs and it seems that Celexa and Lexapro have had the least side effects overall compared to the others but I'm still dealing with a very debilitating burning in the center of my head that exacerbates the POTS so much that I still am unable to function. I've been regularly taking Ativan which does work to help the burning go away but its results are very unpredicable and sometimes has been known to make the burning worse, like today. Since I have a very strong suspicion that the burning in my head is related to my OCD/BDD since as a teenager I had the burning also, then increasing the dosage of Celexa would theoretically help me but alas I cannot go higher that 3mg of liquid Celexa BID because it makes the burning much worse. I used to treat my OCD/BDD with higher doses of Celexa or Paxil but it hasn't been possible once I got the POTS. I noticed the higher the dosage the smaller the diameter of the burning becomes but it intensifies so much that it feels like a giant magnifying glass is burning a hole in my head. Too much burning in my head causes me to go into seizure-like episodes in which I get strong tremors that everybody always mistakes for epilepsy. In these cases, I would need to take a super dose of Ativan like 2 or 2 1/2 mg and drink a lot of Ceralyte 90 or liquids in general to clear it up. Sometimes a hot pack on the head or putting my head in the sink helps. As far as Lexapro goes, I've tried 1 1/2 mg BID and it carried less side effects than all of the medications I've ever tried and seems to depress the Autonomic Nervous System less than Celexa but it makes the burning in my head impossible to live with. I've noticed that some drugs taken in low doses will make the burning worse than taken in higher doses. I don't think this is the case for Celexa though but I'm hoping that if I took a high enough dose of Lexapro it might get rid of the burning. Otherwise I'll just have to keep taking Ativan for the rest of my life with all of it unpredicability and side effects. So again I'll raise the question of what Lexapro/Celexa regimen works for them and whether they have ever gotten burning in the head by taking too much. Does anybody know any other solution to get rid of the burning other than the Ativan that I use? I have an idea but I would like to get some feedback first.

Hi, I haven't posted for such a long time since I've been in and out of hospitals, ERs, etc. for my severe case of POTS. I'd like to know what benzodiazepines work best for POTS. I remember one person saying, for instance, that the only thing that worked for her was Ativan(Lorazepam) and I seem to find it true for my case. Here are my experiences with this class of drug. Xanax(alprazolam) seemed too weak and short-lived for me. Klonopin(clonazepam) exacerabated my symptoms of dizziness and excessive urination where I "grayed out" and fell on the floor after taking 1mg. I am currently taking .5mg of Ativan twice a day together with my Cymbalta(Duloxetine) and have seen much improvement. I don't think I could tolerate Cymbalta otherwise. This could be close to finally being the winning combination for me but I am still comtemplating Valium(Diazepam) instead of Ativan and Effexor(Venlafaxine) instead of Cymbalta. I'll save the Cymbalta vs Effexor discussion for another time. Thanks a lot for your help.

Thanks for your replies, both of you. Eventually I'll probably try the Clonidine. I'd really like to find a nice beta blocker though since they are probably better for the long run. I loved Pindolol so much with the exception of the effects on my stomach and it actually raising my BP if I take it when I'm freezing. The local doctors here are amateurs as far as treating POTS goes. Are there any specialistsin the NY area? -Robert

Just wondered what people's experiences were with Carbedilol(Coreg) and Labetalol(Trandate, Normodyne) since they are both mixed alpha and beta antagonists? I feel like I'm going crazy doing all the work for my doctors in the state I'm in. The only guides I have to work with are "The Postural Tachycardia Syndrome: A concise Guide to Diagnosis and Management" by GRUBB and "The Postural Tachycardia Syndrome(POTS) Pathophysiology, Diagnosis & Management" by Raj. If Grubb likes Labetalol, then why doesn't he like Coreg since it has a longer half life and stays in the system longer? I will be trying Coreg tomorrow but am scared. There's no definitive answer. Everybody on this message board are on different medications, names I've never heard of. Thanks for your help. Robert

I'm sure this has been discussed before but I'm in such a bad state right now that I can't do the research to look it all up. I have hypertensive POTS which I believe is also hyperadrenergic POTS. My cardiologist doesn't really know much about the different types of POTS and what drugs to prescribe for them. I was on Pindolol which was working fine except now I can't tolerate it because my Raynaud's Syndrome is getting worse and the drug actually exacerbates it and increases my BP! Which drugs are best for hyperadrenergic POTS without the side effects of exacerbating Raynaud's Syndrome. I'm thinking of trying either Carbedilol(Coreg) or Labetalol(Trandate, Normodyne) since they work on the Alpha recepters. I'd be grateful for any information on this matter. Thanks a lot Robert

I believe that Propranolol(non-selective agent meaning works on both B1 and B2 receptors) has been helping my low blood volume problem because of its inhibitory effect on Beta 2 receptors generating smooth muscle vasoconstriction. "Stimulation of β2 receptors induces smooth muscle relaxation (resulting in vasodilation and bronchodilation amongst other actions), induces tremor in skeletal muscle, increases glycogenolysis in the liver and skeletal muscle. Beta blockers inhibit these normal epinephrine-mediated sympathetic actions, but have minimal effect on resting subjects. That is, they reduce the effect of excitement/physical exertion on heart rate and force of contraction, dilation of blood vessels, opening of bronchi, reduce tremor, and breakdown of glycogen. It is therefore somewhat unexpected that non-selective beta blockers have an antihypertensive effect, since they appear to cause vasoconstriction. The antihypertensive mechanism appears to involve: reduction in cardiac output (due to negative chronotropic and inotropic effects), reduction in renin release from the kidneys, and a central nervous system effect to reduce sympathetic activity." -Wikipedia (Beta Blockers) So to rephrase the previous post, I'm interested in people's experiences with non-selective beta blockers like Propranol. Here is a list of them: Non-selective agents- Alprenolol Carteolol Levobunolol Mepindolol Metipranolol Nadolol Oxprenolol Penbutolol Pindolol Propranolol Sotalol Timolol

Hi everyone, I'm currently taking Pindolol which is a "nonselective" beta blocker for my hypertensive POTS and am interested in learning about the other popular beta blockers used for my condition and the pros and cons of each. There seems to be quite a lot of beta-blockers out there. So far I've had mostly good experiences with Pindolol but have had to lower the dosage because it would increase the coldness in my extremities and add to my gastroparesis and intestinal dysmotility problem(which I think is directly related to a dysfunctional thermo-regularatory system with decreased blood flow). I've read that all beta-blockers cause cold extremities which kind of makes sense if the drug slows your heart down. I'm mostly interested in which beta-blockers carry with them the least amount of side-effects and withdrawal symptoms since I'm super-sensitive with medications and their effects. Thanks a lot for your help -Robert

This is an excerpt from a previous post about my life: My illness began four years ago with a flu-like illness after a very stressful four month long medication withdrawal syndrome from "Effexor" which I was taking for OCD. After many tests were performed by my regular doctor and then later by a CFS specialist, the virus Coxsackie B type 4 and 5 showed up as active in my system. The doctor said that if my illness lasted for more than 6 months then it was probably CFS. By then it had already been like 4 months. I accepted the fact that I had CFS and took a year off of college until my flu-like symptoms finally went away. Even though the infection felt like it disappeared I still fit most of the diagnosic criteria for CFS. Eventually I progressed enough to return to college but unfortunately my OCD was becoming intolerable.(If it's not one thing it's another!) I was already maxed out on "Paxil" and the decision was made to augment with "Anafranil" which is an old tricyclic drug from the 70s. I distinctly remember developing tachycardia on this drug which was odd since I had been on this drug before without any problems. Suddenly I was stricken with excessive urination, dehydration, and near absent bowel and stomach motility. After having gone to the ER and being rejuvenated by a simple saline IV, I stopped the drug as soon as possible. However, things didn't stay stable for too long. Now, not on any Anafranil at all, my entire syndrome was coming back again. I then realized that by lowering the Paxil, things got better. The cycle was like this: Lowering the meds gave a short remission followed by a relapse which I would respond by lowering the meds once again. Eventually the time came when I ran out of meds to lower and that's when the real trouble started. Going to the ER was becoming common place now and I was becoming fearful of my life which I continue to be till now.... Basically my CFS/POTS got really really really really really really bad when I took Paxil combined with the tricyclic drug Anafranil. PROCEED WITH CAUTION!

WOW! You have the swishing also. What could possibly be causing that? The beta-blocker Pindolol is strictly for my hypertensive POTS but since I believe POTS is cauing the gastro-paresis, then theoretically the beta-blocker which is helping the POTS should help the stomach also. I think the specialist Dr. Grubb in one of her studies shows there is a link between POTS and delayed gastric-emptying. I have a ton of Reglan but am too scared to take it right now because of the side effects. I might have to bite the bullet and take a little. Do you think it could "kick-start" the stomach to work again. There is no 'churning' or 'rumbling' at all, just silence.

I've been on a beta blocker now for a month or so and my stomach still isn't working. I don't have any appetite and feel full all the time and when I try to eat I get nauseous. I'm bascially on a liquid diet and get most of my calories through Nestle's Nutren 2.0 and Ross's TwoCal HN. Too much exercise makes my stomach problems worse. The worst symptom is when I get nervous, listen to loud sounds on T.V. or haven't had a lot of sleep, my stomach starts secreting HUGE amounts of liquids that can be heard across the room like sloshing tidal waves and I get this burning pain. Is this due to a bacterial overgrowth in the stomach or small intestine? I experimented one time by taking two pills of Rifaximin, an antibiotic, which I had left over, and it actually helped but I was too scared to follow through since I don't have a doctor backing me. I'm going to be doing small intestinal bacterial overgrowth breath test from Great Smokies tomorrow. Has anybody ever had symptoms like this, particularly the enormous stomach/intestinal secretions when under stress? Thanks a lot Robert

I've just been recently diagnosed with POTS and am currentingly taking 5mg of the Beta Blocker "Pindolol" twice a day, or more accurately 2 halfs in the morning/afternoon and 2 halfs in the twilight/night. I find that when my POTS is doing better and I take the pills anyway that it will actually will raise my blood pressure and/or heart rate for a while before leveling off. During this time I get a paralyzed feeling and sometimes need to lie down. When I tell my cardiologist this, they just claim that the drug isn't supposed to do that and it must be something else but it really is happening! Anybody else have this experience? Thanks a lot Robert

If you need magnesium, I would suggest eating pumpkin seeds, sunflower seeds, spinach, and tofu. You could really be making your POTS worse by taking the magnesium as a laxative or any laxative at all. I think the safest way to stimulate bowel movement for POTS patients is water enemas via a water enema bag you can buy at your local pharmacy. Don't use tap water though because of the chlorine but filtered or bottled water. I have usually been using 1000 cc or two pint bottles at a time. I used to be able to tolerate a lot of things in the past such as milk of magnesia, exlax, and exercise but I have really deteriorated.

Right now I'm not taking any multivitamins because of the Magnesium Oxide in most of them. I can't tolerate anything that has a laxative effect and from what I hear most POTS patient can't either.