dysautonomia

[TomD]

I have been diagnosed with dysautonomia. Been passing out and experiencing very low blood pressure 83/77, or very high pressure of 150/117. What fun. Hot one minute, freezing the next. Anyone else out there with this problem in addition to their MS?

[Seasha]

Hi Tom - I don't suffer from this but here is another post where others chime in that will be helpful to you: http://www.msworld.org/forum/showthr...t=Dysautonomia

TAKE CARE!

[Poppy7402]

Thanks for the link to that thread, it's very interesting and one to bookmark.

I'd wondered for awhile whether I also have dysautonomia. My heart rate goes through the roof frequently because of an exaggerated startle response. This is particularly bad any time I'm sick.

When I was in hospital in early September my bed in the ED was next to the staffroom and every time people opened and shut the door to this room I got one heck of a fright, with accompanying tachycardia. Talk about utterly exhausting. Things improved greatly when I was moved up to the ward. The doctors probably thought I was anxious but it was just the startle thing. I probably should have said something but was too tired at that point to care.

[laurasari]

I was initially diagnosed with dysautonomia in 1987. I had never heard the term. After several hospitalizations my cardio put his hands up and sent me to research facility. I was accepted at both Vanderbuilt inTn and NIH in Md. I went to Vanderbuilt for 1week their dime. It was great felt good for years but things have changed and I didn't have that cardio any more due to a move. took me more than 2 years to find a new Dr that understands. I Have OH and POTS. Stand up BP drops heart rate goes up.
It's cyclical but it stinks
Good luck
Laurie
What did your dr do for you

[22cyclist]

I have dysautonomia and had a pacemaker put in to regulate my heart rate and B/P. Since then I have no longer passed out which was happening quite often. I wish you luck in finding a good cardiologist.

Take care
Lisa

[mjan]

I am diagnosed with Dysautonomia. My astute Primary's mother has it, so she knew a neurologist who specializes in testing for this diagnosis. It was a 2 day evaluation.

I do not sweat properly, instead of my BP going down suddenly, it goes UP along with my heart rate. Sometimes it leads into hypokalemia as I also have a rare kidney disorder, Gitelman's where my kidney's mis read cues for fight or flight and spills out electrolytes, esp potassium rendering me paralyzed.

Once I got on a beta blocker this has mostly settled down and now no more ER visits. Its scary, but I am used to it.

I wonder how and if it were related to MS.
Does anyone truly know?

Jan

[fishead]

I have been diagnosed with dysautonomia. Been passing out and experiencing very low blood pressure 83/77, or very high pressure of 150/117. What fun. Hot one minute, freezing the next. Anyone else out there with this problem in addition to their MS?

DITTO on the blood pressure HIGH then LOW. OMG I TOO, seem to be freezing one min then ripping shreds of clothing off so I can cool down. Thanks for the name of it

[fishead]

looked this disorder up and realize THIS is what is going on with me. UGH, it explains all this junk.

[fishead]

Autonomic Dysreflexia is another name for this. Just wanted to let others know in case THIS is the term they are familiar with

[ree221]

I Have Exaggerated Startle Response Too

Thanks for the link to that thread, it's very interesting and one to bookmark.

I'd wondered for awhile whether I also have dysautonomia. My heart rate goes through the roof frequently because of an exaggerated startle response. This is particularly bad any time I'm sick.

When I was in hospital in early September my bed in the ED was next to the staffroom and every time people opened and shut the door to this room I got one heck of a fright, with accompanying tachycardia. Talk about utterly exhausting. Things improved greatly when I was moved up to the ward. The doctors probably thought I was anxious but it was just the startle thing. I probably should have said something but was too tired at that point to care.

I have Exaggerated Startle Response too. I never knew anyone else who had this. Is it a MS thing?

[fishead]

exaggerated startle response is relatively new for me and SHEBANG it is NO FUN at all.

[Poppy7402]

A type of myoclonus

From what I've found it appears that an exaggerated startle can type a type of myoclonus, and be related to MS. Still a wee bit of reading to do to be sure though.

[ree221]

Startle Easily!

From what I've found it appears that an exaggerated startle can type a type of myoclonus, and be related to MS. Still a wee bit of reading to do to be sure though.

Thanks, Poppy,

I have been researching as well. Not a lot of info out there on this related to MS although it is a definite medical condition. I believe it is one of those rare MS things that no on really made the connection to MS yet since it is so rare and probably never reported by the patient.

A lot of times a patient won't report things they don't think have anything to do with MS. But we should report everything even if it seems insane. MS is an insane disease that has no reason or rhyme and anything can happen at anytime with MS. Expect the unexpected!

[SNOOPY]

I have Exaggerated Startle Response too. I never knew anyone else who had this. Is it a MS thing?

No.

An exaggerated startle response is not due to Multiple Sclerosis.

Exaggerated startle response or hyperekplexia (also known as hyperexplexia) is not recognized to be associated with multiple sclerosis (MS).

http://www.mymsaa.org/publications/m...research-news/

I do have an exaggerated startle response, there is a diagnosed cause for mine, but it is not MS.

[ree221]

Woops...

[QUOTE=SNOOPY;1468351]No.

An exaggerated startle response is not due to Multiple Sclerosis.


In all due respect, Snoopy, I think you need to read the articl you sent me again. The article is about the lack of awareness of Hyperplexia being related to MS, that it is an under-recognized symptom of MS:

"EXAGGERATED STARTLE RESPONSE (HYPEREKPLEXIA) IN MULTIPLE SCLEROSIS: REVIEW OF 30 PATIENT-REPORTED CASES

Exaggerated startle response or hyperekplexia (also known as hyperexplexia) is not recognized to be associated with multiple sclerosis (MS). The purpose of this report is to increase the awareness of this symptom in MS. Thirty-seven patients self-reported "startle response" after an inquiry in MSAA's "Ask the Doctor" column in The Motivator. Most cases of hyperekplexia in the medical literature are related to hereditary neonatal hyperekplexia and post-traumatic stress disorder (PTSD). Hyperekplexia involves an overactive autonomic arousal, which creates difficulty discriminating and interpreting stimuli. The primary treatment reported in the literature has been clonazepam. No MS patients [responding to the survey] received clonazepam. Thirty of the 37 respondents completed the survey. Startle was usually precipitated by auditory (82 percent), visual (17 percent), tactile (six percent), or a combination of stimuli. The average age of onset of MS symptoms was 26 and the onset of startle was 35. Less than 20 percent of MS patients had startle before their MS, which suggests previous trauma (PTSD) is not related. Other data include: 67 percent have the relapsing-remitting form of MS; 93 percent reported multiple episodes per day; 90 percent have an exaggerated startle response at least once a week and half of these experience startling at least daily. Hyperekplexia was variously described as frightening, embarrassing, painful, dangerous (falling), and disruptive to personal and professional relationships. A total of 73 percent had not had discussions with any healthcare professional, and 17 percent reported that their doctors stated that startle might be related to MS, but had no therapeutic suggestions. In conclusion, hyperekplexia is an under-recognized but potentially treatable symptom of multiple sclerosis. Increased recognition and understanding will promote treatment options.

— Jack Burks, MD, Miriam Franco, MSW, PsyD, Andrea L. Griesé; Susan Wells Courtney; John J. Masino