Severe Episodes

[Xhale1991]

Hey guys.

So for the past 6 months I have been chronically ill. I was DXed with POTS at Mayo a few months ago and given a beto blocker which only made things worse for me. I also believe I have CFS and am currently seeing a doctor to further examine that. Not sure if the CFS is the primary problem and POTS is just a symptom of it, or if its the other way around....

Anyways, I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.

[Chaos]

Hi. Sorry to hear you are experiencing this. Sounds somewhat like things I used to have when I was ill for the first couple of years.

Here's a link to a video of someone having tremors similar to what I used to experience. Like you, I would be freezing cold, unable to talk, with lots of other symptoms I can't even remember now. I think I would usually get really low BP though.

I have both POTS/NMH and ME/CFS. Suspect these symptoms were from inflammation in the brain and autonomic nervous system caused by either an autoimmune reaction to the primary infection that caused my illness, or to a viral re-activation that occurred at the time the symptoms occurred. I wonder if POTS and ME/CFS aren't subsets of the same disorder- or the same thing in many patients.

[Xhale1991]

Hi. Sorry to hear you are experiencing this. Sounds somewhat like things I used to have when I was ill for the first couple of years.

Here's a link to a video of someone having tremors similar to what I used to experience. Like you, I would be freezing cold, unable to talk, with lots of other symptoms I can't even remember now. I think I would usually get really low BP though.

I have both POTS/NMH and ME/CFS. Suspect these symptoms were from inflammation in the brain and autonomic nervous system caused by either an autoimmune reaction to the primary infection that caused my illness, or to a viral re-activation that occurred at the time the symptoms occurred. I wonder if POTS and ME/CFS aren't subsets of the same disorder- or the same thing in many patients.

O God lol I can't even watch that video. Going to throw me into a panic attack thinking it will happen again.

But yea that's basically what mine look like.

Did you find anything to help this? It's pretty terrifying as it's taking place. I was thinking about asking my doc if I could try a saline IV.

[Chaos]

I haven't had one in a few years, so not sure if it's because of the med combo I'm on or if it's just a function of time in the disease process. I know some of the research on ME/CFS now is indicating that there is a significant difference between patients who've been sick for less than 3 years vs those who've had the illness for longer. All the attacks I had like this were in the first couple years of the disease.

One thing that helped was to avoid triggering them. I know that sounds stupidly simplistic, but my POTS specialist emphasized to me that there is a certain amount of "learning" or sensitization that occurs in the autonomic system. He stressed that it was important to try to avoid doing anything that set off ANS symptoms in the first place, as much as possible, so that the system wasn't on such a "hair trigger" to be fired off and over react so quickly and violently. Using the combo of non-pharm and pharm solutions that we figured out over time seemed to work for me. At least I never had another episode like this once I saw that POTS specialist.

Hyper POTS patients sometimes don't react well to beta blockers so you might need another drug option. Are you having a follow up at Mayo or with another doc to work on finding some kind of med protocol that might help balance your ANS symptoms?

Sorry you're having to deal with these. They are NOT a fun time.

[Katybug]

I have had similar episodes but I don't turn blue. That part should definitely be discussed with your doc sooner rather than later. I could feel the adrenaline surge through me before these episodes. Then, of course, its like the worst adrenaline let down ever after the episodes. As Chaos said, learning what my body's new physical limits were was the most helpful part of controlling these episodes. I know I can get about 4 useful hours of activity out of my body in a day. I have to be tuned in to how I am feeling at the moment.....as in, if I feel good when I wake up then I get my 4 hours then, if I don't feel good then and have to lay back down and wait until the afternoon or early evening before I get my 4 hours, then that's what I have to do to not trigger one of these episodes. Some days I may have to quit early and others I might squeak out a fifth hour.

When you say beta blockers made things worse, can you describe that? One possible underlying cause of POTS is mast cell activation syndrome (mcas ) and beta blockers can make that condition worse and are therefore contraindicated. Just wondering if the worsened symptoms would be consistent with that and you should talk to your doc about investigating that possibility?

[Freaked]

Yes, that can happen with POTS. I get all those symptoms very badly. I started a thread about it the other week (called 'POTS and extreme "panic attacks"') and many other people were describing the same episodes. My HR has reached 180 during them. The other day my BP spiked to 155/100 and I had bad leg tremors, out of nowhere. An hour later my BP was 98/62. Adrenaline dysregulation seems to be one of my main problems, and these things seem to be extreme adrenaline surges. Panic attacks are listed as a symptom of POTS, because these are effectively EXTREME panic attacks, even though they don't have a mental cause. Adrenaline attacks would be a better phrase.

Edit: the blue extremities is probably cyanosis caused by adrenaline-constricted blood vessels and fast breathing. I get that too. But you could ask your doc or buy a home pulse oximeter to measure your oxygen.

[Xhale1991]

Yes, that can happen with POTS. I get all those symptoms very badly. I started a thread about it the other week (called 'POTS and extreme "panic attacks"') and many other people were describing the same episodes. My HR has reached 180 during them. The other day my BP spiked to 155/100 and I had bad leg tremors, out of nowhere. An hour later my BP was 98/62. Adrenaline dysregulation seems to be one of my main problems, and these things seem to be extreme adrenaline surges. Panic attacks are listed as a symptom of POTS, because these are effectively EXTREME panic attacks, even though they don't have a mental cause. Adrenaline attacks would be a better phrase.

Edit: the blue extremities is probably cyanosis caused by adrenaline-constricted blood vessels and fast breathing. I get that too. But you could ask your doc or buy a home pulse oximeter to measure your oxygen.

Wouldnt a beta blocker help as it blocks epinephrine and its effects? I may try taking one again. I was on one before I started getting these episodes but had to stop taking it as it was making me too dizzy.

I know it came make things worse if you have MCAD so what tests could I get to see if I am having mast cell issues?

[Katybug]

Here is an old thread that has good mcas info including links:

http://forums.dinet.org/index.php?/topic/22533-urgent-list-for-mcasmcad-testing/?hl=%2Bmast+%2Bcell+%2Btesting

[corina]

Hi Xhale, welcome to the forum!

[gjensen]

XHALE, recently I had a respected neurologist explain that my episodes was sympathetic over activity. It is being suggested that I take a beta blocker and clonidine. I have had trouble with a beta blocker to, so I am cautious about the idea. It is a different beta blocker, so we will see.

She explained that she wanted to try to calm the system down. There are other ways to do this, but this is where this doctor wanted to start.

And as has been mentioned, it seams that something triggers the spells for me. I am more vulnerable in the morning, so I am very cautious for the first half of the day. Even the transition from sleep to wake is a problem for me.

I get a lot of pain, and sometimes the pain itself is the trigger. I had thought that I had reacted badly to some medications, but looking back am thinking that the effects of the medication was the trigger. My point is that there is a variety of things that can be the trigger.

For some people a knowledgeable doctor may try to calm the system down, and reduce the frequency and severity of the spells of "sympathetic over activity".

Stress or anxiety can make the whole thing worse, so it is important to keep as level headed and calm as possible. I say that knowing how difficult that is.

Obviously this is something to discuss with a knowledgeable doctor. I am only trying to relate where I have been on an at least similar topic. What might be going on with you might be different than what is thought is going on with me.

Regardless, I know how hard these experiences are and would not wish them on anyone. They are no fun.