Surges - Day To Day And Flying

[E246]

I have a few different types of surges that cause a problem.

Was having a great day - very hot here, got a bit dehydrated and driving home HR suddenly climbed from 70 to 158 while driving.

Managed to pull over in bus lane but knew it wouldn't come right down until I'd had a drink.

This didn't feel adrenaline driven - so a bit different to normal.

Still feel very shaky from it.

So similar thing happened flying - except my adrenaline drove the tachycardia and it went higher. It was probably one of the first times it happened and was frightening. Now i know my hr will come down.

We are desperate to get on holiday but could not risk flying after that journey with repeated surges 18mts ago. Flight was late and I think they pressurised quickly. So don't know if it was a complete one off.

Really just checking whether this is similar to anyone else and what has controlled this. Generally I can't take bb because they drop hr too low. Maybe taking valium would be enough. Maybe I should just do a short haul (1hour) and see. The journey I want to take is only 3 hours.

Thanks

[E246]

Just been back into old posts and there is quite a bit about flying I had not found before.

Still curious if anyone gets the surges without the panic. Also often happens when driving.

[Guest Alex]

Hi Emma,

I did/do get surges like those you describe.

I've been told by so many people (dr's, nurses, therapists, relatives, etc) that all my health issues are due to anxiety, and all I need to do is treat my anxiety disorder, that sometimes, even when I'm in the middle of an adrenaline surge (which thank goodness) I haven't had in quite a while (not having them makes a couple of weeks feel like forever ) I am as calm and composed as I can be. One day I was on the phone with a friend and my bp and hr were allover the place as i recorded them for my dr, but continued my conversation with her without skipping a beat. I guess - sadly - I've gotten used to them. That's not a good sign....

I don't really know what to say about driving or flying. Never had a surge while driving, never been in a plane since my symptoms started.

Hope you get some answers, as I don't think my rambling is of any help.

Alex

[Alaska]

In the start of my diagnosis journey, many of the Doc's stated I was going through anxiety/stress because all the labs stated I was normal (well until the Tilt Table Test). I told them it wasn't CAUSED by anxiety. I think anxiety is present only after my body sends signals to my brain that "something is wrong, take action". But see how I said AFTER something is wrong with my body (like low blood pressure). This is what I had to keep telling the Docs. YES, anxiety is there, but only after an episode of something like sudden low blood pressure. THAT'S PRETTY NORMAL!! I have found that if I'm feeling a little off I have to work to stay as calm as I can, because I have found the more stressed or anxious I get about it, the more hyper-aware I become of myself the worse I get, and so on and so on. So anxiety does play a part, in that it will take a situation from bad to worse as the surge created by fear or anxiety starts to ask my body for more "ie fight or flight" and my body is already trying to take a break and can't do it.

I have found the best thing to do is to be as pro-active as possible and listen to your body for the early warning signs. Listen really for any sign. Feel a little hungry, better get something now. Don't wait until your are starving. Starting to feel a little warm (heat is a trigger for me), I keep a fan by me at work and turn it on before I notice I'm really hot. It's bright outside (I'm sensitive to light), make sure to shut the blinds early and feel free to wear those sun glasses in stores and out to eat. You did the right thing to pull over and were listening to yourself. Did you listen soon enough though? I don't always do this myself and later after an episode realize that I didn't listen the early, early warning signs.

I know that some of you have these surges with no reason behind them at all, so my reply doesn't apply to that... unless maybe there are little things you haven't picked up on yet that cause them.

[Maiysa]

Hi Emma,

This happens a lot to me. The first few years of having dysautonomia I could barely drive. Before I got sick, I used to just buzz over to L.A., from Nevada on a whim, I loved the freedom. Also drove all the way to the midwest with my boys and husband and several times I drove by myself, which was about a 20 hour drive. But now I'm lucky if I can drive about 20 to 30 minutes. It has gotten a bit better over the years as I used to not be able to drive anywhere. I just took my first trip a few years ago to Phoenix and ended up in the hospital on the way there from blacking out over and over again due to the car movement. My blood pressure wouldn't come back up. But I have learned that I can't be anemic if I'm going to take a trip, so if it's after my time of the month I have to make sure I'm up on my iron and I always drank a lot of pedialyte before the trip, no sugar, chocolate or caffeine. And my blood sugar has to be stable before I get in the car. I take a lot of snacks. We usually make me a bed for me to lay in the back, it helps to lay on my side. Also we have ice packs in a cooler in case I go into hypo orthostatic shock, these ice packs and freezing water are my life savers. Doc said they are probably causing my blood vessels to constrict, causing blood pressure to go back up. I just put them on my back and neck if I get the whirly's. Anyhow, it's quite an ordeal for me to go anywhere, but we just had our first trip to L.A. without a single incident and I was able to sit up during the ride. It was really a mile stone!! I also find that if we stop and eat some protein and a lil carb every few hours and walk around, I do better. I have not been able to fly for about 5 or 6 years now, but maybe someday. But I think it's normal to get flushed in the car. I don't know why, for me it's not anxiety as the first time I blacked out I was laughing and had no reason to feel any type of anxiety as I felt fine. I think it is the movement. I know for me curves and going up hill are difficult but have found all the above very helpful. I hope this helps.

[E246]

Thanks for your replies, - it is reassuring because you are right the doctors just don't get it. And your post made me realise I have now gone past the point of caring what they think or worrying that it might be anxiety. I know it is not. There was no panic in the car - just real thirst. As it's happened lots of times now I feel quite calm and know it will pass.

Still wanted to know if it was exactly what others experienced. Also it always makes me ill for 4-6 hours afterwards. Don't know if anyone else gets this?

I suppose I feel cross that my pots specialist has never quite taken on board that this happens or have helped with the situation in terms of advise(because they don't acknowledge it happens).

[Guest Alex]

Hi Emma,

you are not alone in this.

In terms of getting/feeling ill afterwards - I'd say I feel exhausted after such a surge, so if I'm lucky and relaxed enough to take a nap, I can still function for the rest of the day. The problem is that sometimes i had such surges for the entire day, and when I tried citalopram I had them 24/7 for almost a week. They stopped 2 days after I stoped the med, which is the time it took for the pills to be out of my system.

I'm sorry you're going through this, and without playing the devil's advocate, your dr may not be at fault here, (s)he might just not know what to advise you to do, as most dr's don't. The only advice I got from my dr is to try to relax, to stay calm as they will go away. I don't know if there is a dr that may be able to pinpoint to the cause of these issues, but they can at least acknowledge our suffering.

Alex