Lovebug

I had panic attacks prior to POTS. The first one was after a high carb meal and it ran the gammut...all the way through hyperventilation and tingling extremities (thought I would pass out but never did). Once I knew what it was, I recognized my next one and counteracted it by lying with my feet elevated, my husband fanned me, I took a pinch of Valium, and talked to myself so that I could breathe normally. I didn't use a bag although that would help but I just used pursed lip breathing and slowed it down. The panic attack stopped (I was on my way to my dads funeral so I knew what was going on at the time). Since being diagnosed with Dys, my attacks are completely different. I have IBS-D really bad, get nauseated, sometimes my heart races with increased breathing but sometimes not. And I usually get my other Dys symptoms (dizziness, ringing in the ears, pulsating sound, cold hands/feet, tingling and anxious feeling=fight or flight). I don't even pay them much attention now and they tend to go away quickly and do not escalate. There is power in knowledge and if you know what is going on in your body, it can help you mentally & possibly improve your symptoms. I so hope you get where you can cope with whats going on b/c this stuff is miserable!

I've been improved with most of my symptoms but have those days in which I have horrible symptoms. However, one of them I'm not sure can be attributed to Dysautonomia. My ears sometimes feel full of pressure and sometimes it feels like my hearing is being lost. I used to think I was about to faint when this happened but apparently it is only in my ears. I'm not the fainting type of POTS (my BP goes up upon rising). And usually the ear symptoms occur when standing or standing for too long. Does anyone think this is definitely Dys or should I go to an ENT & have my ears checked? The last time they were checked, I had increased pressure and the doc just told me to hold my nose and blow out to pop them (much like you do after a flight). I did not like that doctor...LOL! Any input here is greatly appreciated.

Hi Sue! Remember what I sent you in the private messages? My cardiologist told me that not all Betablockers are created equal and he specifically said that Atenolol is more potent. He started me on Inderal b/c it is a much older drug (& milder...according to him). Maybe you can get your Rx changed...? Also, note that if you quarter the pill (& it isn't scored that way) then you don't know exactly how much medication you are getting with each dose. This could account for different BP's on different days, possibly.

Sue...we are very much alike! I am the same way with sensitvity and over active nerves. Even when the doctor tests my reflexes my leg jumps above my head, LOL! I can expect to turn the corner in my house and know my husband will be there but I still jump b/c it scares me. Very, very sensitive (and as you know, this includes meds). However, I can't lie, I am so much improved since I started my treatment with my current doctor. He has me functioning like a normal human again. He's treated me since August. I could be better but I'm so happy to be an individual person again.

Yes...my doctor is adamant about small doses (as low as pediatric or even neonatal). But what I find interesting is the need for a tilt table test. The first cardiologist I saw ordered it twice for me but it was never done due to scheduling mix ups. I agree with the other poster regarding posture testing. The day I had my worst episode was one in which I could not incline from a lying position without a jump in HR & BP. I would be 115/60-80 lying but if I so much as raised up on my pillow my vitals were 130/90-100 and worse if standing (150/110-120). If that isn't a positive tilt, I don't know what would be so I don't think I need the test at all. My current doctor agrees. He has plenty enough data to support a diagnosis.

Hi Sue! I'm one of those Dysautonomics that get a high BP too. I don't think your results are a contradiction but it just shows you are an individual and your "lot" in this disease is that you have both high & low BP at different times. Maybe your beta blocker dose is too high. Afterall, we don't take beta blockers for HTN anyway...we take them to calm our nervous system.

I asked my doctor about the blood transfusion too. He's so funny...he said the medical community does more harm than good to us Dysautonomics and that it isn't worth it to get a blood transfusion. In answer to the question: I think most people know due to symptoms and possibly urinary output. When I first began fluid loading (4L/day), I would urinate lots of clear urine. I started a new med (Celexa) which made me feel much better and it seems I'm hanging on to my fluid as I don't require as much water and my urine is more concentrated and at a lower volume.

One of my most persistent symptoms with this dreaded disease is abdominal pain (IBS-C) and I've tried on 3 different occassions to begin a low dose estrogen BC pill with no success. My pain would get substantially worse (& so would the diarrhea). My GYN wanted me on them due to endometriosis but she finally gave up due to my symptoms. The problem is...I still have bad symptoms any time I get my "dot" so now I'm talking with my doc about a hysterectomy. I definitely think the patch (or any hormone) could affect the symptoms of this problem. I certainly hope you get better!

Hi Cat Lady! I agree with your opinion regarding Inderal. Years ago a cardiologist tried to put me on Toprol XL (told me to break it in half) b/c I was having unexplained HR increases that were bothersome. I could not tolerate it at all (had SOB, felt terrible) so I was left untreated. But my current cardiologist told me that Inderal is an older drug and isn't as harsh as Toprol. He said it definitely makes a difference and I absolutely despise taking drugs that are brand new. I, personally, feel like they haven't be "tested" enough so I prefer older drugs. My doctor was right, the Inderal (at a very low dose) has made a huge difference for me.

I'm just wondering how much water all of you drink to keep you going? I drink 3.5-4 liters or more per day. This seems like alot even for a Dysautonomic. I also dilute Powerade Zero in with my water on occassion. How much volume do you drink?

Hi Dixze! Hang in there! To answer your questions: it is true! I have improved so much with the help of my wonderful doctor. I've been feeling bad for a few years but this past year was really bad for me. I had surgery for endometriosis, had vital signs changes (high HR & BP), and just felt like a dying person. After replacing my Vitamin D (I was low), getting chiropractic adjustments (this helps your nerves), fluid loading (3.5-4 Liters/day), starting a low dose of an old beta blocker (inderal 5mg am & 5mg pm), & then a low dose of Celexa (5mg per day)...I feel better. These all were steps and didn't happen at once b/c my doctor did my treatment slowly and in a step by step approach (not everything all at once). But each step I took was an improvement. At this point I feel like a human being again. I still have symptoms but I can tolerate them somewhat. I just want to keep working b/c I have the most wonderful job in the world (I teach nursing students). Your first thing is to become well educated about your condition and then find a caring health care provider. Take things very S-L-O-W-L-Y!!! For example, my doctor told me to start out with walking (slowly) for up to 5 minutes. If that is too much for me, he says to "back off". If I do OK, gradually increase it. Yes, exercise will help lower your BP if you run high so this is a good benefit long term. There may be days that you can do nothing so learn to accept your limitations. But please don't give up. I thought I was doomed and now I actually leave the house and enjoy myself!

I feel for you as I had to go through a few docs before I found one. I was willing to travel and pay out of pocket if I had to but thankfully my doctor is local (within 45 miles) and takes my insurance. I was lucky enough to be referred by my GYN doctor....YES, my Gyn told me about him as she was the only one that would listen to me. Anyway, he's a cardiologist but just happened to accumulate Dysautonomia patients through the years. However, you must be careful with cardiologists b/c the one I saw just before him (he was actually an EP cardiologist) told me, "your heart's fine" and when I said "but my BP & HR are too high, somethings wrong with my nervous system" his reply was "your heart's fine". I knew I was doomed until I got recommended to the other doctor. Anyway, the first thing he told me was to read this book (I attached the website link but there is a book & I suggest you read it): http://www.mitralvalveprolapse.com/ Furthermore, he told me to do my best to stay away from the medical community b/c regular practitioners will screw us Dysautonomics up! LOL! Anwyay, he told me to ALWAYS start medications at a pediatric or neonatal type dose b/c of sensitivity to meds. He place me on a low dose Beta blocker (inderal) which has helped but I still had lots of pain. Then he started me on Celexa and my abominal pain was immediately improved. I still have symptoms and I still water load LOTS (3.5-4 liter/day) but I'm much better. I hope you find a doc and you get to feeling better. Note the website that I linked has a clinic in Alabama (maybe you could travel there...?).