Panic During Pots Attack

[dancer65]

Do any of experience uncontrolable panic during a POTS attack? Last week I had an attack during my recall mammogram whilst in the waiting room. I had had my second scan, the room was boiling and they had found something on the scan so I was waiting to see the the Dr. I sat quietly on my own in the corner of the busy waiting room as symptoms started to emerge, sweating shaking etc I was fighting the urge to leave as I felt very anxious and kept telling myself not to over react.! Another patient came over to see if I was ok so I explained I just needed to be alone as I had a condition, I know she was being kind but she kept trying to get to me move to sit and talk to the others. I kept repeating to her I wished to be alone to cope and thanked for her kindness, sadly she didn't listen, I lost concentration of trying to control my emotions! The next thing I ran out the room I couldn't find my way out to my husband who was waiting in the other waiting room. That is the last thing I remember, I didn't faint apparently as I was shouting, sobbing begging my husband to take me home, my knees buckled as he held me and the body tremors started. I caused quite a disturbance I believe. I normally have low BP but when they took it it was 158 90 and HR 138, my husband said I had been laying for at least 15 mins when they did that.

I am so embarrassed about the shouting and crying , this episode has left me feeling really down and stupid. My husband said he had never seen me in such panic, I know it upset him to see me that way. Please can you share any experiences that you have had, is this a normal or am I just highly strung, over the top !!? I may add I was starting with a cold and tonsillitis I ended up in ER on Friday with an asthma attack so it was quite a week!

I know after fainting on My TTT I had a similar panic and managed to get out of the straps and I also hit the nurse, another embarrassing moment!

Thank you

[Alma]

I'm so sorry you had to go through that. I haven't had exactly that experience, but I was crying during my recent transesophogeal echo, and I was very embarrassed about it. The nurse said it was the Valium that they had given me for pain relief during the procedure making me cry. But it is very embarrassing, and I can empathize with you.

It is too bad that the well-meaning lady couldn't just back off and respect your request to be left alone. How annoying!

[angelloz]

I have had this! Absolutely. I have learned to control it with slow, deep breathing and talking myself through it. I too have low BP that goes very high when this happens. I have had it occur while waiting in a doctors office too. Anything from the routine I guess. I think it is our bodies over reaction to stress of any type. I have also gotten this when given medication IV for migraine. Once, I screamed out for help as I thought I was dying ( to match you embarrassing moment! ). I think there is a reason beyond panic attack. Don't feel alone!

[ks42]

Do you have HyperPOTS (have you had your catecholamine levels tested) and/or are you hypovolemic? Have you been testing for mast cell activation syndrome?

I have the same issue. When I am upright for too long, or am in an overstimulating environment (lights, noise, talking, etc), I have gotten worn out, or my symptoms have become activated for some other reason (like temperature or a combination of all of these things), my body starts to produce excessive amounts of adrenaline. Adrenaline is the catecholamine you produce during a panic attack as well, so what happens is that it basically turns on your body's panic response, even though there's nothing for you to really panic about. That in turn triggers your panic emotions, and everything is just downhill from there. As I've been told by all my POTS docs, most of the time, in POTS, it's not actual panic - it's your body's alarm signal, or warning sign, that something isn't physically right. But your brain reads all the adrenaline as panic, and it triggers a panic attack.

We think this happens to me for two reasons. One, I'm hypovolemic, so the longer I'm upright / the more physically stressed I get, the more warning signals (adrenaline) my body sends off to let me know my blood volume is getting dangerously low. The second is because I have HyperPOTS, and producing massive amounts of adrenaline is a hallmark of this disorder, especially when upright (even sitting up with feet on the floor). We also thought I could be having mast cell attacks (often triggered by heat) but I didn't test positive for MCAS.

Otherwise, there are several things I do to avoid these situations. First, make sure I'm extremely hydrated & my salt intake is up before I have to go do anything! If I feel any panic type feelings coming on, I drink about 16 oz of water or coconut water at once (yes, I always travel with at least two 16 oz bottles of fluids, even for short doctor appointments)! It tamps down the adrenaline & heart rate response a bit. Eating can help too, especially salty snacks.

Second, I actually travel with ice packs in one of those small insulated lunch bags. If I have an attack, I'll put ice on my neck, wrists, or bottom of my feet. Those ice packs go pretty much everywhere with me, as long as there's the slightest risk of being in a warm environment.

Three, I always make sure I have a way to immediately get my feet up and recline back. I don't wait until I get full fledged panic - the minute I start feeling off, I make sure I'm reclined with feet up. If I have to ask the front staff if there's a room with a table where I can lie down, I do it. If I have to leave the office and lie down in the car or even the hallway for a few minutes while I drink fluids, apply ice packs, etc. I do that. However, most of the time, I travel with a reclining wheelchair. Whenever I wait somewhere, I recline the wheelchair so I'm basically laying down. It's helped a ton, because then I know I can always lay down whenever I need to. And if the waiting room is too overstimulating, I leave for a few minutes.

Learning breathing techniques (meditation, hypnosis, biofeedback) also really helps, but because the cause is primarily physical and not emotional, the breathing doesn't help until I do everything else (hydrate, recline, use ice). Then the deep breathing becomes more effective.

So yes. I show up for most events or appointments with a backpack or a really large purse that has my water, salty snacks, and cooler bag with ice packs.

[statesof]

Hey Dancer65 I as well had a period where I would get the POTS attack/ panic attack episodes, they're pretty awful to sit with. Mine where more internalized than yours; I would suddenly feel very very bad like I was going to die or have a heart attack, sometimes I would feel sick to my stomach, and would get this feeling like I felt like I should be having trouble talking and moving my fingers though it all functioned normally. For me I typically didn't know what was happening till it was over, I told my parents to just be in the same room with me during one episode because I had no clue what was happening and thought I would for sure need them to call 911, luckily it was just one of these episodes and everything came down after 10-15 minutes. They can be quite scary though.

[dancer65]

Thank you to all of you for you replies, helpful suggestions and support, it is so nice to know that I am not the only one experience this panic during an attack, it makes me feel may be I am not totally neurotic !

I don't know what kind of Pots I have, we don't get the extent of tests here in the uk, I do know I have a drop in Bp when standing and during my TTT so I am taking florinef which has helped the dizziness. And raised my BP from 66 /45 on a normal day to about 90/ 60 . I did post a short while ago about a pots attack (no panic that time ) and Sarah and ginseng suggested mcad however Dr here not keen to refere me to specialist for testing. Interestingly I suffer with Alopecia and mast cells have been found to play a part in the auto immune disease, I also suffer from food and environmental allergies, I often have a swollen face, rashes and asthma . Can you have it with other forms of POtS beside hyper .

I am desperately trying to gather as much information together as I can to try to pusuade my surgery to refer me to a POTS specialist , I feel the need to know why these things are happening an exclamation of you its your POTS is just not enough any more! Understanding what's going on gives me the opportunity tontry to take as much control and help myself as much as I can.

tHank you again for listening best wishes to you all:) sorry if I have repeated myself from previous posts brain fog and memory not good !