jadecat

I have this issue as well I thought at first it might have been 'normal' angina but it turned out to be spasms, I have been on ccb's for well over 5 years for me, I found they helped reduce my pots like issues big time.They took a month or so to kick in, as I guess your body has to get used to the blood flowing more freely.

Both the Midodrine and fludro increased my 3 children's head pain. Lots of talk about Gabapentin as a migraine praventative: http://www.ncbi.nlm.nih.gov/pubmed/11251695 But you would have to check with your daughters POTS Dr. to see if it might cause more ANS issues.

Wow I can well understand your concerns! This big shot psych seems to have a bit of an issue with his ego, while I am in little doubt that somataform disorders are real, I feel they are incredibly rare and have a much more complex interrelationship with mind and body than any professional has to date come up with. The issue you have here is an arrogant 'professional' that feels the need to empower himself by going around basically telling other professionals they are wrong and he is right! If this chap genuinely had your well being in mind he would have requested to consult with your other Dr.'s in view of putting together some kind of care 'support' package into place. Telling the other Dr.'s to stop treating you shows how this chap is so convinced he is right even though physical evidence is there to explain your symptoms on a medical basis. I would be looking at his mental health and his ability to make a good diagnosis when he is displaying all the signs of a person with some form of personality disorder. We as a group of people with complex medical conditions are up against this very scare development in money saving tactics by many governments, lol I know I am now sounding like I have a complex he he. Have a look at this and you will see what I am getting at: https://spiral.imperial.ac.uk/bitstream/10044/1/10361/6/I%201%20Somatoform%20high%20IACAPAP%20Final.pdf http://rheumatology.oxfordjournals.org/content/43/5/672.long Money makes the world go around!!

Corina, thank you for fixing the title for me. I have seen on some EDS boards that a few folk with EDS related POTS have done well with Ritalin.

Artluvr09 My son does seem to do better laying on his tummy side as well. Katie, no my son has had no sleep study tests of any sort, we will be seeing my son's GP Fri with a long list of things we want looking at.

For a number of years my son has been having major issues with falling asleep suddenly when he is in certain positions, for example while sat up with legs resting at hip level, laying down on left side or sitting up so legs to the left. It now happens daily and he is getting very concerned about this issue. Anyone had this. Sorry I just noticed that I titled this thread wrong It should read Sudden Uncontrollable sleep!! My brain was else were as always!!

Oh I forgot to ask are your IgG and IgA low normal by any chance if so look up hyper IgM syndrome it is a primary immune condition.

Don't give up! I could do with all the in put you have on this subject. A while ago my daughter was tested for possible immune dysfunction due to recurrent strep infections. The consultant got in touch requesting re do of bloods as her IgA and IgM were above ref range, second bloods same thing the Dr. run tests to rule out myaloma etc, which I guess it must have as the Dr. said results were all ok and her problems are most likely due to her gastroparisis! I am still concerned re the whole raised IgA and IgM thing though and still seeking some answers.

I am looking into this as a possible issue with regard to my one son's fatigue and sleep issues. This may be helpful: "A thorough sleep study with polysomnography will show whether the lapses in breathing result from airway blockage or irregular breathe signals from the brain." http://www.sleepapnea.org/learn/sleep-apnea/central-sleep-apnea.html

Hi Sarah, my son's potassium seem normal 4.3mmol/L ref range 3.5 - 5.3, he has not had urine sodium checked as far as I can remember! Hi IceLizard, my son does do light cardio exercise when he can, in the the shape of drumming, TRX and stationary bike on not good days he does leg work with those big elastic bands. My son has tried fludro 2 -3 times to no avail and midrodine (SP?) 2 times bad reaction to it both times. Hi Rachel, I have booked an appointment with GP to get back on track as it is just not fair to my poor son if I don't try and find out what is going on. Hi Arizona Girl, you are so right about fighting in my son's corner and I will keep on until we get somewhere. Ha ha poor Dr. does not know what lengths a mother protecting her children will go to.

My son's serum sodium are 139 with NO slow sodium tablets. Serum sodium levels 140 while on 8 x 600mg slow sodium tabs ref range 133 - 146

Thak you to both of you.

High sodium intake BP still low! I am confused and fed up with myself for not understanding this! My 19 year old son has been mostly housebound over the last 2 years, son's consultant says that son's tilt table test was negative and thus POTS and autonomic nervous system dysfunction have been ruled out. The Dr. did say he thought that my son's constant fatigue and inability to think straight might be EDS related and that my son must start exercising and try getting out! more!! My poor son try's so hard to function but he just can not, yesterday, we got him out to do some sound recording for his sisters show, today he his totally shattered and will no doubt be like this for the next few weeks as always. So the main issue I can not get my head around is why would a persons BP stays low to very low constantly even while on prescribed slow sodium tablets 2 taken 4 times per day and a high salt diet while being well hydrated. It does not make sense unless something else is going on but my son's GP just keeps telling us that my son is just very sensitive to his low BP!!!