New member, scared with adrenaline rushes

[Fifi]

 

Hi to all you brave members,

I have been reading your really informative posts and now desperately need to engage directly with a cry for help.

My life has recently been turned right upside down by a dysautonomia diagnosis (I don't fit any category exactly but I think I'm 'hyper') which I now realize has been building very slowly for years. I have been housebound for the past 3 months and have had all the typical symptoms - palpitations, headaches, chest pain, breathlessness, fatigue, weakness, adrenaline overcompensation, dizziness etc.

I'm currently dealing with a really distressing symptom I need advice for: I cannot walk far at all (less than 100 continuous steps) without triggering a pressure/pulling sensation in the back of my neck/head which becomes so uncomfortable I have to immediately lie down to recover. On the occasion that I keep walking this then triggers those awful adrenaline surges which causes face flushing, BP spikes, HR increases, terrifying feelings of doom and feeling that my head will literally explode. These surges can last up to 30 minutes!! Then I'm wrecked!

My BP does fluctuate too much (as seen from my TTT) and I'm wondering whether this is starving my brain of blood/oxygen when I'm walking? Which then causes tightness in neck/head? Which then triggers my sympathetic nervous system to put me into an adrenergic storm??

Any help would be so appreciated. I cannot tell you have upset and scared I am right now as I cannot see beyond how awful this feels. My life has literally fallen apart and I'm far from ready to begin the acceptance phase of all this. I'm still trying to understand what is happening to my body.

Thank you so very much!

 

 

[MomtoGiuliana]

Welcome to the forum.  So sorry you are having such severe symptoms.  The symptoms you are describing are not too unusual with POTS.

Have you been diagnosed?  Have you tried any medications?  Does increasing fluids and salt help?

It is scary.  But treatments are available that help, and many people improve greatly over time.

[Fifi]

Thank you MomtoGuiliana,

My diagnosis was inconclusive but definitely a form of dysautonomia. My neuro thinks it might even have been virus triggered (I tested positive for Epstein Barr antibodies) but this cannot be proven. I'm still waiting for the results of my lying/standing norepinephrine blood tests. This has been creeping up for the past 10 years and until now I dismissed all the little signs as random problems as they never lasted for long.

My symptoms are now all over the place, no pattern, some better days but I cannot walk far without the headache/adrenaline response so I'm miserable with that.

I have been prescribed exercise plus an SNRI as a first attack - does this sound sensible?

[Pistol]

Hello @Fifi - I am sorry that you are so ill. I am familiar with hyperadrenergic surges, so I do know how awful they can feel. If you feel that what you are experiencing comes from too much norepinephrine then you need to have your catecholamines checked. Unfortunately POTS symptoms are not clearly defined - we can have similar symptoms with different causes, so unless confirmed by testing it is impossible to determine why you are feeling this way.  It is not uncommon for dysautonomia to be triggered by a viral infection, so your EBV infection may have triggered an abnormal response. I assume your doctors will continue to look into the cause of your symptoms - do not panic. Until you are properly diagnosed you may want to follow the typical POTS routine: hydration, salt, compression, exercise. In my case SSRI was one of the first meds prescribed and I have seen improvement from it. Others have seen significant improvement from SNRI - so yes, in my experience as well as current studies SNRI can be helpful in the treatment of POTS.  If you have dysautonomia you should see an autonomic specialist - not all neurologists or cardiologists are familiar with the intricacies of treating dysautonomia. You are experiencing very scary symptoms but do know that with proper treatment there can be improvement. Many members on this forum have improved - I am one of those people. Just follow your doctors recommendations - it may be scary to start a new medication but without trying you will never know what helps. Be well!

[StayAtHomeMom]

Welcome. In my research I have come across information that doctors will prescribe what they did you. Personally I have not tried it. Taking your medication as prescribed can help. Sometimes without you realizing it (until you forget to take it). There is a lot of trial and error. Don't give up. You may never feel like you did 10 years ago. But you will get better than where you are. Find your triggers and avoid them. For me it is noise and heat. And I am beginning to see a pattern with long trips as well. They exhaust me way more than they should. 

[Guest ScottS]

On 1/1/2019 at 9:03 AM, Fifi said:

 

Hi to all you brave members,

I have been reading your really informative posts and now desperately need to engage directly with a cry for help.

My life has recently been turned right upside down by a dysautonomia diagnosis (I don't fit any category exactly but I think I'm 'hyper') which I now realize has been building very slowly for years. I have been housebound for the past 3 months and have had all the typical symptoms - palpitations, headaches, chest pain, breathlessness, fatigue, weakness, adrenaline overcompensation, dizziness etc.

I'm currently dealing with a really distressing symptom I need advice for: I cannot walk far at all (less than 100 continuous steps) without triggering a pressure/pulling sensation in the back of my neck/head which becomes so uncomfortable I have to immediately lie down to recover. On the occasion that I keep walking this then triggers those awful adrenaline surges which causes face flushing, BP spikes, HR increases, terrifying feelings of doom and feeling that my head will literally explode. These surges can last up to 30 minutes!! Then I'm wrecked!

My BP does fluctuate too much (as seen from my TTT) and I'm wondering whether this is starving my brain of blood/oxygen when I'm walking? Which then causes tightness in neck/head? Which then triggers my sympathetic nervous system to put me into an adrenergic storm??

Any help would be so appreciated. I cannot tell you have upset and scared I am right now as I cannot see beyond how awful this feels. My life has literally fallen apart and I'm far from ready to begin the acceptance phase of all this. I'm still trying to understand what is happening to my body.

Thank you so very much!

 

 

I've been there and experienced that. In fact, I can still recall the feelings of absolute terror I endured when, in the days and weeks following my last especially bad POTS attack (one that required a visit to the ER) I first tried to return to doing simple, everyday things such as walking (far fewer than 100 continuous steps). Those feelings of impending doom are indeed awful and, for what it's worth, I feel for you. That said, if you haven't already, I recommend you purchase or otherwise acquire both a home fingertip pulse oximeter monitor and a home blood pressure cuff monitor. Having both on hand will allow you to put some of what you are presently feeling and experiencing in a better and more informed light. For my part, there have been times when I was certain my heart rate was so high it was surely life-threatening when (as my own monitor revealed) it was merely elevated. (And my O2 saturation levels merely a bit lower than they otherwise and normally would be.) Armed with that little bit of knowledge put me in a much position to begin to fight back against all that POTS was putting me through.

[Fifi]

Thank you very much Pistol, you have reassured me about those SNRIs, I will begin and hope for even a marginal improvement. To this point in my life, I have hated meds so its time to start to deal with them 🙂 I have also started exercising, well recumbent strength training.

Hi StayAtHomeMom, I'm having a difficult time right now but I have 2 daughters so I do need to keep it all together. My triggers are starting to appear but there are surprises. Would you believe but I had to endure 2 dental sessions for a root canal treatment before Christmas and I managed not to crash afterwards. I sympathize about the driving - we all took a driving trip early October (husband drove) and I literally collapsed afterwards!

Hi ScottS, you have greatly encouraged me with your advice. I can't believe you suffered from these attacks in the past and now teach yoga!! That's amazing. Right now I can't see a future at all so any glimmer of hope means so much.

Already I'm feeling a bit more assured that my symptoms are not unusual which does help.

Thank you all again - I'll keep you posted.