sally

well wishes sent your way. Good luck and hope all works out well for you.

Nina, thanks, I'm aware of those points. Maybe I just didn't make myself clear enough. She was making a off the cuff remark that seemed to lump ALL orthostatic patients into one statement, like it was something we had control of. Fight or flight response is just that, a response from stress whether physical or mental causes what I'm aware of anyway and as you have stated in your response. But, I thought was not the primary cause in all cases. guess you just had to be there. But I'll do some more reading.

What a nut! This guy is probably talking about drug induced hypotension. He really should pull his Merck manual out of the closet and begin reading it again. I would be very interested in hearing what his genius ideas on the genetics side of this problem is and what the cause is. I got one for ya....a new family doctor that is in our old family docs practice told me that the blood pressure issues are caused by the flight or fight response. I just looked at her dumbfounded and said really. Where do they get these ideas from? amazing.

Hi Amber, If you are having migraines often then you may want to speak with your doctor about preventative medication to keep them at bay or at least lessen them as much as possible. There are many medications out there for migraines. At far as the ER, I don't understand why someone would tell you not to go to the ER....if you are unable to get rid of the migraine and you are vomiting and cannot stop especially to the point of dehydration, I would go. They can give you something there to abort the migraine (if you can take Imitrex) and/or give you something else to help also fluids. There are triggers for migraines for most people who suffer from them, you just need to find out what seems to trigger the migraines for you that will also help. Good luck and hope you feel better soon.

my daughter took Inderal & elavil as a preventative for hemiplegic migraines. It helped lessen the migrain frequency and also the power of the migraine. eventually she was weaned back off the meds after taking them for a long period of time when the migraines were no longer a problem.

Great article, thank you for posting it.

Hi Dayna, Hope you feel better soon and best wishes sent your way.

Hi Rebecca, Sorry to hear about your tilt table results and treatment during the test. Sounds like you may need to have a second opinion although I can understand having had the test myself, why you would not want to do that. Maybe you could make an additional call to the doc and discuss the results again stating that you were upset and didn't understand the results on that day of the test, that way you would get another chance to address some of the results better. It sounds like you have something going on for sure with the increase in heart rate to 29 bpm and faint feeling while tilting. do you know your bp results during that time? During mine, I did not faint either but my pressure dropped like a rock and kept dropping consistantly until they put me lying down flat. (60/palp then they reclined me down flat) I didn't faint but it was very hard to breathe and I couldn't talk, my heart did increase over the 30 bpm but I would think that 29 for you would be close enough...geez talk about a tightwire doctor! did they give you the nitro? I did not have that either but I know some people are given that. Also for me, they let me talk throughout the whole test and asked questions through the whole test as well which made no difference to my results. I know in the beginning of the test, I was tensed up and kept squinching up my toes and I kept tightening up my calves because I am so used to doing that naturally to keep the pressure up without even realizing I'm doing it and as long as I was doing that my pressure wasn't as bad but as soon as I totally relaxed my whole body muscles including the toes/calves my pressure bottomed out pretty quickly. So I don't know if maybe that is what you did as well but it could have affected the test. You may want to speak about having another one done with a different physician or technician if possible. Good luck and hope you feel better soon and I agree with Sophia, I would get a copy of your results for viewing.

Hi Greg, Sorry you are having such a difficult time with your supervisor. Do not leave (quit) your job. Especially since you have already filed a FMLA, I don't know how much time you have left under FMLA but have you check into your short term disability if you have that option? I would also contact the ADA regarding your rights & treatment by this supervisor and your human resource dept as well. Their making you get a second opinion is riduculous! It sounds like you are being bullied. Check out these links for information to see what may help your situation and what your rights may be given your particular situation. http://www.dol.gov/esa/regs/statutes/whd/fmla.htm http://www.dol.gov/dol/allcfr/ESA/Title_29/Part_825/toc.htm Good luck

Hi I felt those symptoms when I had ethmoiditis. Sounds like the symptoms of a sinus infection to me.

Hi JHJD I can certainly relate to how you feel in the mornings and walking distances before you begin your workday. I would seek out the parking permit though so you can start out fresher and not so wiped out, there is no shame in it at all. And, its okay to feel frustrated by this disorder, many of us do as well so you are not alone at all. That is terrific that you are an attorney! a plus side is, with your position you will also be seen as an advocate for this disorder and an inspiration at the same time for others when they see that you have a health issue and are still able to do your lifes work by taking measures to allow you to function better and also people will relate to you that have a health issue as well. Also what medications have you tried? Have you tried to take Midodrine in the AM before you start out on your day, it has helped many people function a little better. Good luck to you and hope all is well.

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Hi Rachel, For me....I did not take any medications during pregnancy with both of my children, I did not have a diagnosis during that time frame and I was untreated. I felt great throughout the pregnancies with no problems with BP as I had/have without being pregnant. I didn't understand why at the time but I understand now why that occurs. good luck on whichever decision you make.

Hi Joe, here's the website http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

I would say, if you have noticed blood in your stools or you have a history of GI bleeding or your physician has done the simple test for blood in stool and it came back positive, then have the colonoscopy if he and you feel it is necessary. Depends on how anemic you are and other physicial problems you may have going on such as heavy periods or not, etc. This is a call that you and your physician must make.

Hi I see from your note that you have Ehlers Danlos Syndrome. read this from the genetics website I have, that notated..... Quote from website: Autonomic dysfunction. Approximately one-third to one-half of individuals with EDS, hypermobility (and classic) type report atypical chest pain, palpitations at rest or on exertion, and/or orthostatic intolerance. Holter monitoring usually shows normal sinus rhythm, but sometimes reveals premature atrial complexes or paroxysmal supraventricular tachycardia. Tilt table testing sometimes shows neurally mediated hypotension (NMH) and/or postural orthostatic tachycardia syndrome (POTS) [Rowe et al 1999]. I would get a second opinion or question the doctor that did your testing and gave you your results. If you fainted while tilted on a tilt table I would question how he/she feels you do not have an autonomic function problem. Especially since you have EDS as well which can effect the blood vessels.

Hi, Within one of the EDS types, I believe there is a certain characteristic such as very short stature, thin nose, thin lips, large eyes and then other types seem to have a taller than average height, thinner than normal people. But, I have also seen pictures of people who do not fit into either description that also have EDS. It is determined by the defective gene whether or not someone will have EDS. Although, last time I read EDS III (hypermobile type)....they did not find the defective gene for that type yet. I think it depends on the actual extreme hyper mobility you have and if you have other problems as well that fit into the EDS criteria for diagnosis such as the stretchy skin, painful joints, etc. And you can have a difference in degree of EDS, some people have a more mild form and some have a severe form of it within each type. A parent can have a severe problem with EDS while their child may have a more mild form or the other way around. If you feel you have EDS, maybe try to see if you can get into a genetics doc who is familiar with EDS or Marfans. If your joints are dislocating and popping out of their sockets, I would think you would certainly have some sort of problem because that is definitely not a normal thing. Check out the EDNF.org site for information on the criteria and they also have pictures there so you can see the hyper mobility of the joints. Although, a person can be just hyper mobile and not have EDS, so I would seek out a good physician. Good luck

Hello, This is always a very hard decision to make for anyone who has any type of chronic illness and you will hear alot of difference of opinions. This decision I feel must personally be made based on your health at the time and situation of support that you have incase you are not well enough and may need help to make things easier. For myself, pregnancy was the only time that I felt normal. I also see that you have EDS, I also passed this onto our daughters as well as the blood pressure issue but I wouldn't change a thing. Having children was a blessing for us. And I feel there are no guarantees in life that you are going to be healthy even if you were born from totally healthy parents. That includes adoption. Although at times, I have struggled seeing my daughters suffer through their health issues but they have become amazing women because of it or in spite of it, which ever way you want to look at it. I have had health issues mostly all of my life and raising children at times was difficult but had a very supportive husband who was also in the military( now long retired). I did not have the blessing of relying on anyone else such as other family members but somehow we all made it through okay. I just took it one day at a time and task at a time, did my best to take things in stride as best as I could and tried not to get freaked out about the what ifs and the why nots. Its all about perspective for me. If the time for children is not right for you at the present time then when you feel alittle better it may be. You may want to speak to a geneticist about your chances of passing the EDS & dysautonomia to your children and to get more information how it may effect them before making your decision. I wish you the best in your decision and hope you feel better soon.

Hi, Midodrine can cause a tingling feeling sort of like goosebumps. It tends to go away after you have been taking it. It works great for our family and makes it so we can function better. I hope it does well for you as well.

I would go to your human resource dept. Find our your rights under the FMLA and your job. I think the length of FMLA is 12 weeks although this can be intermit in duration. Also, contact your ADA about this. I don't think that they can fire you under the FMLA as long as you are still under physicians care stating you are not able to work but only part time hours. Sometimes, they will state that you are able to work 4 hours a day under some circumstances. They might relocate you into another job that accomodates your needs better though. I know someone that is protected under this situation and it seems to be working for her alright so I know that it can be done. good luck and if this were me, I wouldn't wait. Stand for your own rights because no matter how nice or understanding your employer may be, she will be looking out for her company and her needs first. check out these links. http://www.dol.gov/dol/topic/disability/jo...ommodations.htm http://www.dol.gov/dol/topic/index.htm

Good luck on your procedure and feel better soon

see the doctor..... it could be a kidney infection, kidney stone or something else that needs attention. good luck

Well wishes sent to your step father, you & family during this hard time.

Hi, I hope you feel better soon to go back to work part time, I can relate to how you feel as I'm sure alot of us on this forum can. You are most definitely not alone in this boat. I use to work fulltime at a very physically demanding job with a lot of fast paced activity required which totally drained me completely. It was a horrible existence which required my will power just trying to maintain things. I slept a lot on my days off which I tried to arrange my schedule that I had a day off after working two days on, was usually was spent on the couch or in bed just trying to recuperate my self. Everyone at work thought I was dying I think, they were always making comments about how pale I was, about how sick I looked or about my weight which upset me because I couldn't do anything about it or have any answers for it when questioned. This was when I didn't have any answers for what was wrong with me at that time and I had completely come to realization that my health was just something I would have to tolerate in life with no answers as to why. I cried a lot before going to work everyday just because I didn't have the energy to comb my hair most days let alone face the day with a smile. I also worked closely with a person who had major mental issues as well so the stress of dealing with that was horrendous on my health. It was tough. I tried not to let any one know how I felt at work because I worked in a tough environment with people who (at the time) didn't have a lot of sympathy or consideration for anyone other than themselves (that?s a long story). Finally after being put out on medical leave for about 4+months flat on my back due to exhaustion and back & stomach problems (I was physically a big mess), went back to work part time and that is a struggle for me at times, but its better to maintain part time work. Although, It takes me about 3 hours to get myself together for work. The work environment also had changed which made things a lot more pleasant to work and a lot less stress. Thank goodness for that one! I have a great supervisor which helps. Plus my attitude towards people had totally changed about caring what they thought and not letting it affect me and I learned if it is not good for me than I just don't do it, period! I accommodated myself first from that point on after being out flat on my back. I vowed never to allow any job or another person to run me into exhaustion again. It was a valuable lesson indeed.

Hi could it be that she was talking about tenascin-X? I think I've read that this can happen without a parent having this problem.