Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 05-11-2011, 01:40 PM #11
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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......


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Originally Posted by mspennyloafer View Post
well its triggered by a deep spasm which is why i said flare up
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Old 05-12-2011, 08:43 AM #12
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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.
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Old 05-12-2011, 09:15 AM #13
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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. "
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Old 06-02-2011, 10:47 AM #14
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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.
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