Having fun and having an episode

[mom4cem]

I know this sounds inconsequential compared to what others are going through and I am leary about posting but I wanted to get some feedback. As you all may or may not know I have mvp, dysautonomia, low b/p and sometimes normal to a little above. I get adrenaline surges sometimes many times during the day but not always enough to cause rapid heart rate etc. I do try to keep track of my b/p during the day as well as hrtrate. The surges have been driving me crazy!!! I am starting to live in fear of them and what they will bring.

Last night hubby and I went to a party, I had a few sips of wine and a little beer( I know, should not have done that), was having fun but that was short lived. I started to noticed that my heart was beating a bit fast. I did not have a watch to time it but it was fast and got faster. I kept my cool and kept on going but it was hard. About 1/2 later the chills started, and the teeth chattered. I gulped some water down and took a 1/4 bb and waited it out. It did finally calm down, but I sit here this a.m. feeling sorry for myself and worrying that it's getting worse, what if it happens every day etc. I feel even worse worrying about this when people have much worse things to deal with, like MichiganJan and her family and Ernies recent loss.

These daily adrenaline surges are driving me crazy, but the acutal episodes like last night are crossing the fine line I am already on. The drs just push more bb and then I am too tired and ssri's, I am very leary of trying the ssri's. I worry too much about side effects.

The feeling in the pit of my stomach, the tightness in the throat, the feeling your head will explode, and sometime the heartrate going up and the b/p either goes up or down.,,yikes,,how do you all deal with it? Will a ssri help adrenaline surges? I don't want to stop living life fearing these daily surges and the acutal episodes.

Anyone get these adrenaline surges, live with them sometimes every day and few times a day? My heartrate is usually normal, not abnormally high until I get these episodes and my b/p, well sometimes the upper-systolic is low and the lower-diastolic is either low or normal to upper limits of normal. Can't figure this all out. I really need to find a knowledgable dr.here.

Thanks for letting me complain, I do feel better. I have soccer tournaments all weekend with my daughter! Thank goodness its not to hot here today. Whew! Wishing you all a symptom free day!!!

[Poohbear]

I don't really know what to say except to offer my support.

I do know many of us do not tolerate any alcohol at all and even though you only had a little to drink that may have been the culprit of the last episode.

Meds have not helped me either.

I do think it's worth you trying the ssri's. Many people get relief and if one of your primary symptoms is adrenaline surges then the meds may really help.

I often get autonomic storms several times a day; for me I just have to lay around a lot and tailor my life to doing a lot from home.

I have empathy for you though. It's hard to adjust to this disorder sometimes.

Hang in there!

[Guest Julia59]

Mom4cem,

Sorry to hear your having a rough time lately. I wouldn't worry about getting worse----this is just part of the ANS system acting up again. This is just the way it is for us.

I can't drink much of anything---wine, margarita---ect. I can tolerate a little beer---maybe a half of one. I feel the same thing---fast HR, chills, ect. I used to love going out and drinking some margaritas---and then dance all night long. It felt good to cut loose on a Friday after a long stressful week at work. If I tried that now---I would end up in the hospital------------

I miss the fun---I come from a family that likes to party----but we behave----we really do----LOL. I still party-----I miss my import beer----and I miss the margaritas, but now I can just drink a few sips and have the same affect as before----

I have those same adrenaline surges---but I don't get them as often now. I just think it's the way our body tries to compensate when the ANS malfunctions. I would be more worried if there was no adrenaline surge. I know it is very uncomfortable---I know this for sure. It is the most hated part of my POTS---in my book anyway. I know I go through spells with this, and then it goes away for periods of time---but it always seems to come back-----uggg. When i'm like this, I don't like to be around anyone---people don't understand---most of them anyway.

Don't feel this is trivial-----it's really rough to get through---I know this. When I had this real bad---I lost a lot of weight---because I couldn't eat.

But take heart--------I do think they pass. I believe the wellbutrin helped mine considerably----and I just take a baby dose. Stress can aggrivate the situation---so try to find ways to sort any stress out by pacing yourself.

Wish I could help more---take care.

Julie :0)

[yogini]

I don't think what you're going through is inconsequential at all. These episodes are terrifying. But if it makes you feel any better, most of us probably have them.

It sounds like your episode may have been triggered by the party. Maybe it was the alcohol combined with being on your feet for a while. I can relate, beacuse many times my HR and BP are "normal", but I then have attacks exactly as you describe. Sometimes they are triggered by activities, and sometimes by nothing at all. For me taking a beta blocker every day has helped tons, and when I switched from taking it at night to the morning it actually got rid of 90% of my attacks. The BBs did make me really tired, but that fatigue has gotten a lot better over time. So it may just be a matter of finding the right meds for you. SSRIs work for so many people so I would go for it.

Fluids, salt and compression make a big difference too. When I have a special event I load up even more on fluids and salt and it seems to help. Although it's never easy, these episodes get a little easier to deal with over time. I just tell myself (or at least try to tell myself!) to stay calm because I have been there a hundred times before and it will eventually pass. And as they reassured me at the Mayo Clinc, these episodes will keep happening, but they are just a symptom of what you already have and don't mean you are getting worse.

Hang in there,

Rita

[MomtoGiuliana]

I wouldn't hesitate to post about any POTS symptoms--that's what we are all here together for after all!

I would guess that the combination of the small amount of alcohol and the stimulation of the party was a likely trigger. That can happen to me too, and I avoid alcohol--definitely when in a public setting. I find that even a small sip of wine can trigger POTS symptoms for me. It has to do with the fact that the alcohol causes your blood vessels to dilate.

Have you tried an SSRI before? It is a life-changer for me. I would be a lot more sick without it. I take a very tiny dose--but this small amount really seems to keep my ANS regulated. There is an adjustment period for most people--POTS or not. I had a very hard adjustment period that lasted nearly a month and a half. But, it was definitely worth it. Of course, there is no guarantee it would help you, but SSRIs are safe and I would say worth a try.

Hope you managed the tournament well!

Take care,

Katherine

[mom4cem]

Thanks friends. Survived the first part of the tournament. The girls won all 3 games today. We have 2 tomorrow.

I keep eyeing up the box of lexapro and wondering if I dare try it. I know it could be a lifesaver who knows. I know I need to try, just have to get up enough guts to do it.

Thank you all for making me feel like I am not alone in feeling these types of symptoms. I sometimes wonder because I don't have the OI part, well not always, but who knows what happens right b/4 the episode starts, could be the b/p drops then significantly rises to compensate and starts the symptoms,, guess I'll never really know and need to accept that.

[KathyP]

Hi Mom4cem;

I have the exact same thing you have. I have MVP dysautonomia, but I was also diagnosed with vasovagal depressor syndrome and IST (Inappropriate Sinus Tachycardia). I have never thought of what I have as adrenaline rushes. I was told they are anxiety and/or panic attacks. I am thinking that it is the same thing but either way I can't stand them. They make me feel completely debilitated when I am in one. "Knock on wood", I have not fainted, blacked out, or lost control in the past 10 years of having these spells, but I am so terrified that I am going to. I have gotten to the point of total agoraphobia!!! I am fighting my way back little step by little step.

I feel so guilty being like this. I have 2 children, a daughter 12 and a son 6. My daughter plays softball and I love watching her, but a couple of weeks ago I got that rushing feeling out of the blue and had to lie down in the van until she was done playing. Now I can't stand the thought of going back to the ball diamonds because I don't know what triggered it. When I have an attack I have xanax to calm me down but it makes me so tired it defeats it's purpose.

I can't say that these spells have gotten worse over the past 10 years. They feel the same as they did the first time. I think that my fear of them has gotten worse. I still get them out of the no where and when I worry. Everytime I have to go somewhere my adrenaline starts rushing, my heart starts pounding and I get this overwhelming feeling of terror. It is like I am living a nightmare while I am wide awake and there is nothing really to worry about.

I now know exactly what you are talking about. I now know these episodes won't kill me. I now know I don't have anything to worry about. But I still can't stand these rushing feelings of fear. I was just diagnosed with dysautonomia within the past year. I am also trying a hormonal balancing compound to help keep my system completely balanced. This seem to be helping so far. I truly feel that going to a very incompetent doctor in the beginning of my symptoms and not knowing what was going on made me so terrified for so many years that it has become ingrained in my thinking. I am trying so hard to get past all of this worrying about every little twitch and pain. This is how it can get worse for you, WORRYING ABOUT IT!!!

Now that you know what you are dealing with take the steps to keep your system balanced. Find a good doctor you feel comfortable with that knows about dysautonomia. I too used to love to go out and have a few margs, (their one of my favorites) but haven't in a long time because I am terrified and that just thinking about going throws me into another panic. Eventhough you can't drink like you used to at least you can go out. Embrace that!!! LIVE!!

I don't mean to sound like a downer. I get so depressed because my worry made my symptoms worse and I wish I had a way to go back to the beginning knowing what I know now! I have been getting out slowly but surely. I do plan on getting back out and having a small margarita real soon, oh, with extra salt please!!! REMEMBER, SOMETIMES THE SYMPTOMS CAN GET WORSE IF YOU LET THEM!!! Thinking positive helps. Take care!!!

KathyP