flares in public
 

im just now experiencing real "flares" like real tos with the nausea and all of that.

i freak out completely, i actually feel like im going to faint. this has never happened in public, fortunately.

but when it does, how do you all handle this? are there any tricks to making it easier until you go lay down somewhere.

i won't actually faint right? i don't understand why i feel so nauseous either.

Do you mean a flare that instantly happens ?? when you are out & about,vs one that is already happening and you go out & about - it gets worse???

I only had slight nausea during the dizziness times early on. I guess I did have the dizziness almost to point of a faint a few times.
But I just stood still and took calming breaths till it passed.

But I think for me those feelings were due to the vertebral artery being messed up by spasms and pulling the on the vertebra themselves.
It faded away after being off work & good PT.

yeah actually i take that back i have had one in public. i guess technically it wasn't instant.

i was waiting for the bus, it started some, then riding i felt like i was going to burst into tears...i was scared and didnt know what to do. i no longer ride the bus bc of that.

im pretty sure i have POTS which does not help.

and anxiety. just thinking about it makes me anxious. i guess breathing better is the only thing i can do in the moment.

ive tried shaking out my hand..from the deep paralyzed feeling

but i dont remember that working much, lol

I had to look up POTS, wasn't sure what it was .
http://www.dinet.org/pots_an_overview.htm
just a portion of the page for others that may be reading.

[While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system's control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).]

Wow..this is really eye-opening to me! The symptoms you describe with regard to "flares" such as nausea, faintness, and dizziness I have experienced myself. I've had 2 incidents of this so far that I can recall. I never realized those symptoms were my TOS flaring up. The 1st time I was just sitting on my couch watching TV and all of a sudden I felt really dizzy and slightly nauseous, almost like I could faint. My husband had to open the window so I could breathe in the cool air or I really think I could have fainted. The 2nd incident was about 2 weeks ago. I went out to see a movie with my family and while was out, I felt progressively worse. I thought I was getting the flu because I felt really nauseous, fatigued, and my body felt like it was on fire, but I had no elevated temperature. The next day, I felt much better and was able to go to work. I've just been recently diagnosed with TOS and all this is honestly scaring me to death. I never know how I am going to feel from one day to the next and sometimes I feel just horrible. I'm glad this support group exists because I don't know where I'd be right now without all this info and all these caring people. Thank you so much!

hey sry still recovering from flare so lazy typing.

people with EDS are prone to POTS. for some reason :confused:

Ehlers-Danlos Syndrome (EDS), a connective tissue disorder, is found in some POTS patients. Physicians propose that these syndromes occur together due to abnormal connective tissue in dependent blood vessels in those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures (Rowe, Barron, Calkins, Maumenee, Tong & Geraghty, 1999). Simply put, this connective tissue abnormality allows excessive amounts of blood to pool in these patients' lower limbs when they stand up.

Are your flare-ups or shut-downs?

Flare-ups: pain hightens, burning, throbbing, numbness, dystonia
Shut-downs; ur autonomic and sympathetic systems shut down due to pain, lack of hydration, breathing stops

learn ur tolerance and prepare ahead

well its triggered by a deep spasm which is why i said flare up

Yep, as i have been told so many times...prepare. We tend to go and do as our brain is accustom to and we kinda get "spanked" by not paying attention, right?

so how do we prepare for the unknown?

1. Make sure the long acting meds u are on are still doing its trick and u have a short acting for times like this. And if you are not on any meds follow the same directions below:
2. Make sure you are doing your own diligence by breathing exercises, drinking lots of water, moving the CNS & MSS gently; methodically calmly, massages and whatever it takes to calm down the spasms for you.

I know its a no brainer, but we all have to keep reminding ourselves as we plow through each day. How many times do i say to myself, O ma'an why did i reach for that, why did i lift that, why am i sitting here on the computer this long...... :eek: :D

yup

i try to hide that i am in pain around people, especially at work or my parents. so i wind up doing things i shouldnt be doing.

definitely off topic but i found this, so for any hypermobile sufferers, it pretty much sums up my experience (and i imagine with a tight neck tos this only gets worse)

"I hope you have had some improvement since these last posts were made. As for me I have had some problems with neck pressure and fainting type episodes along with blood pressure changes. For me the blood pressure changes turned out to be orthostatic hypotension. When I go from lying to sitting up or from sitting up to standing or any other combination of these my blood pressure will drop suddenly causing the dissiness and darkening of my vision and sometimes collapse or near collapse. Often it will rebound after dropping and jump higher than usual. I will feel a pounding in my neck and head but this will usually calm down before too much longer. I started on beta blockers and this has really calmed down the blood pressure changes and heart rate changes and helped me to not have the fainting episodes near as much.

This is like the Orthostatic Hypotension, but a little different: Something else to consider is that with certain types of EDS, if not all types (I have classical) your vascular system is weaker - maybe not as much as veds, but still weaker). I have talked with other EDSers some with Veds, others with Heds and still others with Ceds: in all cases some will have naseua start up and get progressively worse with the act of bending down or leaning over (like to pick something up off the lfoor or to reach into a lower cubbord) and then standing back up. Even with the medications to adjust my heart rate and blood pressure I still have this symptom. It seems that even with smaller blood pressure changes from the stress put on the vascular system and our relative weakness and so inability to handle the changes as well can cause the naseua. The more I do these movements the sicker I get and eventually I will actually vomit if I don't stop. It really limits my physical activities around the house if it requires more than just a little bending and/or lifting.

Another thing to consider is that if you turn your head to the left or to the right and experience dissiness or a fainting feeling it can be because of constriction of your corotid artery. The changes from these movements and the subsquent constrction changes the blood flow to the brain and causes the symptoms. Just something else to consider. I don't have this particular problem but I encountered it at my phsyiatrist's office recently.

Also you may consider having a "tilt test" done to rule out Sincope (pronounced sincope-y - I have been mispronouncing it for years it turns out! :) ). I have yet to have my test but it is something that has been mentioned as a possibility to me with my overall picture of symptoms. Just another thing to consider.

The cold sweat also comes along with my stomach problems when I have the orthostatic hyptotesnsion and the other similar problems with even the minor "lower cubbord" symptoms. I usually get the roaring in my ears (rushing) when my heart goes into tachycardia. This will cause the rushing sound, the pressure in my neck, but not the fainting or blacking out or vision dimming. It will make me feel like I have been on a roller coaster in my stomach and head. This usually happens if I have forgotten to take my beta blocker and so my heart goes into high speed and so the tachycardia. When this happens I can have a resting heart rate of at least 200bpm. It gets much worse and sometimes not as bad depending on the scope of the misfire in my nodes in my heart. "

ive been reading more about this and hypermobile people tend to suffer from Neurocardiogenic Syncope


http://www.dinet.org/NCS/ncs.htm

What are the symptoms of NCS?

Neurocardiogenic fainting usually occurs while standing. Emotional stress, stressful condition and pain may trigger an episode, especially among the young (Shah, Gupta & Lokhandwala, 2003). The onset may be abrupt or associated with warning symptoms such as fatigue, weakness, nausea, sweating, pallor, visual disturbances, abdominal discomfort, headache, pins-and-needles, lightheadedness or vertigo (Deering, 2003). Presyncopal patients may also complain of palpitations, vomiting, disorientation, and difficulty speaking clearly or coherently (Grubb & McMann, 2001, p. 60.). Other symptoms that may present before a faint include feeling either warm or cold, tremors, yawning and having a bluish/purple or red coloring to the skin (Alboni, Brignole, Menozzi, Raviele, Del Rosso, Dinelli, Solano & Bottoni, 2001).

During the faint "seizure-like" activity may occur (Grubb, Gerard & Roush, 1991). This convulsive activity is thought to be distinct from a seizure disorder.

Patients are sometimes symptomatic after a faint as well. Patients may complain of symptoms including nausea, clamminess, lightheadedness, headache and malaise (Deering, 2003). Patients may also experience vomiting, abdominal discomfort, weakness, tremors, cold or warm feelings and confusion (Alboni et al., 2001). Patients who experience frequent neurocardiogenic syncope may report symptoms between faints as well, such as chronic fatigue, headache, chest pain, exercise intolerance, heart "flip flops" and an inability to tolerate prolonged standing.

i think the pain from the tos and bad postures is exacerbating this ten fold.