jclair

i haven't seen an EDS dr as of yet..didn't know there was such a thing..lol..

Hello everyone.. I am writing, finally, after I have had my first appointment with Dr Grubb. Let me first say I had been diagnosed from the Cleveland clinic with Pots.. and autonomic dysfunction disorder by my local dr's here.. My appointment was Sept 7th after nearly a year of waiting to get in to see him. We arrived the night before and stayed at the hotel on the campus, which was $59 per night.. And it was great~.. By the way..We went to the spaghetti warehouse to eat..i recommend it..LOL.. Anyhow..We arrived at 10:00, my appointment was at 10:30.. And we were taken back to the room around 12:30, which we were prepared for the wait.. I slept the entire time.. My sister took me, and took notes, which was great.. Dr Grubb then stayed in the room, for 3 hours..total.. Showing slideshow presentations on this illness I have now been diagnosed with. And its called... *drum roll please*.. Ehler-Danlos syndrome.. The vascular type, type IV.. After well over 5 years, I finally have a diagnosis.. And Ehler -Danlos is in some way related to POTS.. But this dr is incredible..Amazing.. Why? Because He takes the time.. Because He is highly intelligent, and it shows..Because He is empathetic.. Because He knows what it is like to have something basically hopeless given to you.. And not only did He give medical advice, such as physical therapy to help strengthen my legs to keep me from a wheelchair longer, and certain medications..But He also gave personal advice..such as seeking a counselor to talk to.. The appointment, the wait was so well worth it.. Now if you read up on Ehler-Danlos, at www.ednf.org you will see that the prognosis is not good for someone with the vascular type.. But.. just knowing, just seeing a dr who knows..who truly knows what I have is very real.. And understanding it is worth all the years of not knowing combined. I also mentioned to Dr Grubb about his many fans here at this site.. He has done wonders in the medical field.. He is an awesome man!!! When I got home, He sent me and my family dr a book, called When bad things happen to good people.. Buy it..get it..Its worth the reading.. God bless you all.. I am most often too weak to get online and write, but I finally had the strength today to do so. Hugs.. Jan

Hi.. Many trips to the e.r. for me, the dehydration and headaches always go together.. And usually I am given some pain medicine thru the iv.. although now..thankfully, I have a mediport.. YEah~~~.. lol.. Anyway..I keep anti-nausea medicine always at home along with some prescription pain med.. hugs take care, jan

I can relate..Its 2:00 a.m and I am up..lol.. and when I sleep I sleep until late..and that is not a good pattern to be in, but it always starts with feeling so bad I need to rest, sleep during the day..soon before I know it I am off my routine again. I tried ambien..That worked for a while until I started sleepwalking, getting up in the middle of the night doing odd things.. So now I take nothing more than the regular meds.. I wish you all the luck..hang in there ~s~ take care, jan

~waving~..i did.. Midodrine dropped mine to the low 30's and had to be taken to e.r. etc.. So no more for me.. i probably had too much of a dose but still..scared me enough.. Hope you do okay.. jan

Hi everyone. Am planning my trip for my first appointment with Dr Grubb in September. We are so far from Toledo that we need to fly in, stay at a hotel, etc. Any recommendations on the least expensive places to stay, visit?? Any ideas on what I should take, etc?? Thanks, Jan

Each time I read a post here it amazes me the similarities in conditions. I have had a problem of what my dr says my body builds up a tolerence to the medicine and fights it off, or else it just quits working for me. They change my medicine every 3-6 months.. Although I will say so far...knock on wood...*whispering so the medicine devil won't here*..that cymbalta has helped with the dizziness more than the others.. But the bp medicine constantly gets changed it seems. And 4 months to go before seeing Dr Grubb in September.. whoo hooo~~ jan

Giving you a hug..I know how you feel.. The whole crowd thing gets to me at times, especially if i know its coming. I took midodrine before..I have to say that medication was the worse for me.. It dropped my bp too low, (I have orthostatic hypertension). But I know from reading Dr Grubb's information that it helps some.. I feel for you.. I wish someone could wave a wand and take this illness away.. Thank God for the boards..and so many people who understand.. Jan

Hi I am looking for the last article Dr Grubb published.. I know someone gave this to me before.. Can somebody out there give me the link?? Thanks, Jan

No driving for me anymore..Just isn't worth the risk to others out there on the streets..and I am sure with as many fainting spells as I have the dmv would jerk my license away so fast I couldn't blink..lol...so its safer in the long run.. A pain for family/friends, but they agree, its not worth the risk to others..

Its 4:54 a.m. here...anyone else wide awake??? this means bad day tomorrow... jan

hi..i think it says something about that in Dr Grubbs book and possibly the new paper out?? Jan

Oddly enough.. I have pain, between my neck and shoulder blades, don't know if its the same as yours or not.. It hurts..then burns.. Nonstop.. What has helped though, I have noticed is the medication they put me on in the hospital. Niferex, for low iron, magnesium and potassium i believe.. I could be way off on why the pain is better, plus its late and I am wide awake.. .. hope this helps..take care jan

hi.. Its rough, having the test, I have been through it twice. But what choice do we have really when there is a possibility of getting help? Hang in there..I got very sick on both of mine.. I didn't pass out.. My lower legs turned blue.. i lost feeling in them.. I was so nauseous.. and my bp just kept going up..along with my hr.. hang in there..let me know how it turns out! jan

Hi everyone.. I have decided that I am backwards, or inside out or something. Seems that things have the opposite effect on me.. say medication, non drowsy..will put me to sleep. Or if I get a sinus infection, it seems to be 100+ times worse for me than the average person. I have had this for 4 1/2 years now.. And honestly I feel like at times I am loosing it. My bad days are about 50/50 to the good. So that is good, at least I have spurts where the times are good. However, I feel like I am loosing this battle. I see myself change daily. I often wonder why, how, when things will go from bad to worse. I have often said to my family, it won't be pots that kills me.. It will be something simple like an ear infection. Or an allergic reaction to something.. I thank God for this place.. Not for the fact that so many many other people suffer with this illness, but I thank him for being able to talk to others, to know I am not alone. To know that I am not the only one on this planet who is inside out. Jan (and I have as of tomorrow morning, the 26th, made it to my 40th birthday)

hi everyone. I have taken ambien for quite a while, and it is addicting.. That much I know, at least it is for me. So now I try to take it sporadically. And only if really needed.. One thing I noticed though is that when I take it, if I do not go to bed right away it causes me to binge eat. And the only other problem is that I did sleep walk. I don't remember anything, but I called people on the phone.. .. I was on 10 mg..cut it in 1/2 and took 5 which was much better. I hope this helps.. jan

Anyone live in Kentucky and if so, who do you see? I have an appointment with Dr Grubbs in September..

how do you find tapes from Dr Grubbs?

thanks to all of you for replying to me. I have had this for almost 4 years now, and will definately look up hyperadrenergic.. I can't believe there are other people out there with the same illness as me. I had given up on that. My cardiologist has done so much research. I was wondering about the increase salt. As far as it getting better over time it hasn't. I am still hospitalized. Sometimes I can just go to the er and get fluids and that helps. But.. I am a bad stick, no veins, and wanted to consider having a mediport put in just for this.. Please keep responding, I feel like the first time in my life there is hope..

I had the ablation in April of 2005 and I will say the only problem was cramps..I always had bad cramps when menustrating and these were pretty much like those.. It lasted a few days, nothing that I couldn't tolerate with a lil pain medicine.. And I spotted for a few months after and now nothing.. I would do it again in a heartbeat.. The only problem is that my hormones are still there! Good luck..

I just took my social security award letter to the dmv and got one for 6 years.. Hope it helps..

I have been to the cleveland clinic which was pretty much a waste of time. They were going to do blood volume testing, however i have no good veins, they couldn't get blood or get an iv started so they sent me home, i did do the tilt table test though. My life is pretty much on hold, my sister found this site for me after she did some research. Thank God for that.. Any other suggestions? My appointment with Dr Grubbs isn't until september.. thanks

Hello everyone. I am new to this board. And am very happy to find a place like this.. However, I have a problem that seems unique.. I do not have Orthostatic hypotension, but Orthostatic hypertension. My bloodpressure goes up when I stand.. The longer I am up the higher it goes, it does not drop suddenly, and I frequently pass out when this is going on. I have had this problem for 4 years now and have all of my doctors in Kentucky baffled. Some doctors say its not possible, and don't believe it until they do orthostatic bp's. Some don't believe it even then. I have been treated with many different beta blockers. Also with Florinef, however this medicine causes me to swell. I have limited my water intake it seem to get worse if I chug a lot of water. I have tried to increase my salt, however I cannot get enough of that to help. The medicines seem to work for a little while, but eventually they wear off, or my body fights them and it has to be changed. I have been hospitalized many, many times, for weeks at a time to try and get this under control.. My heartbeat rises when I stand as well, over 20 beats, which sounds like Pots, except that my bloodpressure also rises an example.. laying 126/88 ..sitting 134/96..standing 143/110.. sometimes worse, sometimes better. If anyone has a doctor out there who can give advice I would appreciate it.. I am no longer able to drive, my quality of life has decreased.. The closest diagnosis is some form of autonomic dysfunction.. Mri's are normal, ct scans, eeg, tilt table test, etc..all okay. ANY ideas would help, I am 39 years old. Please help and thanks..