dream02

Hi Nina,

I know you'll have a fun time in Europe no matter where you go. I grew up in Germany and my mother took me all over (except to the UK). This was long before the wall came down and with my fathers job I wasn't allowed anywhere close to East Germany. I wish I could go with you as I've been wanting to go back as an adult!

I'm glad you got your second/third wind and I'm sure you had a good class. Hope you're feeling better!

Denise

I don't think you're weird at all! As with others our bodies just do with things. I am having trouble while laying down too, not so much with tach but with low BP which makes me feel bad enough that I don't sleep well at all. I hope you find help soon so that you can get a good nights sleep as it's so important to get rest in order to face another day!

Denise

Isn't it strange how things work out sometimes!? I hope the neurotin is helpful for you and that you feel better really soon!

Denise

I was told to stop my meds for my tilt table test at UAB. It doesn't seems to make sense to do it while on meds, especially if the meds are really working to allievate the problems. I hope you can get more information and use it with a team of doctors that can help you!

Denise

I'm glad you are going to make that appointment. I hope it is really helpful for you. I recently moved myself and know just how stressful it can be. I too have put a hold on school, I have a year down a year to go in my MBA program. Don't give up, I'm not. Best of luck with feeling better and getting a wonderful doctor!

denise

I too am sending you good thoughts on feeling better. I've tried epiduals myself in addition to botox injections in my shoulder and upper back muscles. They help but takes a little to get over and having a sinus infections can't help so I hope you quickly take care of it. I understand you know wanting to go to the ER but ya gotta do something before it causes more problems.

Best Wishes!

Denise

Thanks for the responses! I do have compresion hoses but will look into that root. I was actually on Florinef when I was first diagnoised but they took me off it and put me on the midordine the 1st time my BP dipped while on it. I may try it again for a longer trial to see how often my BP dips on it as opposed to on the other. I do try light exerciese as often as I can physically do it not just to help my legs but my back gets quite painful when I can't move. I don't get fluids at home, I have the port for access since I have no periffial veins and with my frequent hospitalizations and ER trips it has saved me even more pain with trying to find a vein for blood and fluids. The only time I've used it at home was when I had the septic infection and was on IV antibotics...boy am I glad that's overwith!! I'm still fighting the yeast infections from that.

Are any of your BP's low when laying flat too? I know each of us is different but that just seems different from postiural hypotension. I'm really stuck right now without insurance from doing to much. I have my meds cause the hospital prescribed them but my hunt for a team of doctors has to wait until I have some way to pay them.

Denise

Hi all,

I am sorry if this has already been discussed but I haven't seen it and I need some help. I'm on midordine and take extrat salt and drink tons but my BP still doesn't like staying up. I'll go a while with it low but functional for me and then it bottoms out. I'm not talking about just when I sit and or stand but also laying flat. I was just hospitalized again because it was 48/24. The doctor accused me of not taking my meds but I do and gave her **** for suggesting that. She pointed out I got better after a few days and I pointed out that yes but I was on total bed rest with constant IV fluids. I had a new port installed while I was there since my last one got septic and had to be removed. What's really scary to me is that I feel like I'm l;oosing to many brain cells, it's no longer just my short term memory being affected during the bad times but now even when I'm not feeling to bad I can't think or problem solve. I was getting use to POTS and perhaps I just had a lite case and now this is the really severe case it just seems different. Anyhow, are there any suggestions for helping elevate BP? I'd appreciate any advice.

Thanks!

Denise

congratulations!!! Enjoy these times as they go by so very fast. It seems like yesterday that my children were born but now my son is old enough to take care of me....thankgoodness since I'm having trouble taking care of myself. I'm looking forward to seeing the pictures of what I'm sure is a beautiful baby!

Denise

Denise

40

POTS, cronic migranes, cysts on spine, pitutary tumor

diagnoised, finally, in July of 2004

I live in Georgia

Symptoms at worst...extremely low BP, confusion, poor hand eye coordination, inability to walk without passing out, extreme pain and nausea, tachicardia, numbness and tingling in right side extremities.

Symptoms at best...able to function and do light housework, play my piano and get on the computer without loosing my train of thought and without to much pain. Able to be upright with fearing falling back down.

Meds that didn't work...the list is to long...no meds for migranes, extremely high tolerance for pain meds, beta blockers don't effect my tach.

Meds that work..Midordine helps some, zanaflex, phenegran, nubaine, sodium tablets, protonix, singular.

This board is very helpful to me. Lifting my spirits and knowing I'm not alone has been a great help to me!

Oh Tearose I'm so sorry you are down because of this. I'm just starting my journey with SSI and SSDI so don't know much about it but I do know that you are so sweet and caring to those of us here that I hate for you to suffer like this.

In my state there's a government program call vocational rehabilatation. When you have a disability they work with you to find a job that you are capable of doing...does your state have anything like that? It may be worth looking into as they also will pay for some schooling.

Otherwise I have been going to school online with the University of Phoenix but it's expensive and I've had to quit for now since I've been so bad I can't keep up.

My thoughts and prayer are with you and I wish you the best and know if you keep on keeping on you'll come out on top!

Thanks!!! Those are great and a wonderful pick up for me today.

Denise

I hope that Lexapro is helpful for your migranes as I know how bad they can be. I thought that was my mine problem for years but with so many other symptoms it took forever to be diagnoised correctly. My nureologist told me that I'm in the 5% of the population that preventive and abortive meds don't help (like I didn't know that). I now have a minimum of 3-5 migranes a month with some lasting days so I'm jealous but glad that something may help yours. Have you tried any other drugs to help? There is a looonng list of meds used to help migranes. I wish you luck finding one that is perfect for you!

Denise

Hi Rachel,

I can really sympathize with you. I wouldn't get through most days without phenegran. It's a good thing I can take it since I'm allergic to both compazine and regland. Peppermint candy does help me some also depending on how bad it is. Mine doesn't hit at any particular time but seems based on my pain level.

I've just started on the SSI process myself. I missed my first appt due to being in the hospital and received a denial letter although the hospital called and set me up with another appt. So now I wonder if that's my 1st denial and I only have one more before a trial and also I was told if SSI denies me I'd qualify for Medicaid. On a good note my son and I had our taxes done today and the people there, who have been wonderful to my son, hooked us up with good local people to help us with our issues, his being a divorce and mine being a good SSI lawyer. It pays to know people who know people.

I wish you and I and everyone else here going through the process good luck as well all know this disease should be on the disability list.

Denise

Tearose,

You are too sweet! All of your posts are so encouraging to everyone. Even when I don't feel up to posting just reading everyone elses posts is a big help to me. Wishing you the best!

Denise

I'm glad you went to see him...sounds like it was well worth it! I think it shows us all to never give up. I hope the new meds work for you. I've had several echos but don't know my levels. I'm just now trying to accumulate all my records so that I have more information myself. With all the moving around I've done it's difficult but I'm determined to prevail.

Denise

Denise

Love most books...am an avid reader

Lord of the Rings

my family& friends, reading, playing the piano

I grew up in Germany

Thanks this was a fun item!

Hello and Welcome,

I'm new also and hope you find the support here as helpful as I do. I do a lot more reading than posting right now because my hand to eye finger coordination is really bad right now but my good thoughts are will you and everyone else!

Denise

Great Story Ernie!

It's so nice to hear uplifting stories like that. Great job of standing up for your niece and now we all need to do the same for ourselves and our loved ones! I hope your niece and her new son continue to do well!

Denise

Hi Everyone:

Thanks for all your input on this subject.  i bit the bullet today and called the Clinic.  I explained my situation exactly.  They were actually very understanding and kind.  I now have an appointment with Dr. Fouad on Feb. 8...I know that she is known for doing a LOT of testing...since I've been through it all before, I don't want to do it all again...they said as long as I had the results I wouldn't have to again....we'll see.....

I know I am going to crash hard soon.  I can feel it.  Unfortunately my husband is out of town for the next two weeks and I am here alone with my two young kids.  I am trying to take it easy but I'm sure I can stop this one.  It's scary to think about not being able to call Dr. Grubb when this stuff starts happening.

Kristen

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Hi Kristen,

You'll be in my prayers for sure! I know how you feel...knowing something's happening but not knowing what or when it will hit...and where to go when it does. I hope it at least holds off until your husband is back to deal with your children as I know that will be one less thing for you to worry about. Stress is definatly not helpful. Best of luck!

Denise

the only link I'm aware of is a pituitary tumor

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I didn't realize there was a link with a pituitary tumor. I was diagnoisis in 2001 with a tiny pit tumor and was put on a med to contol/shrink it. Scans since then do not show it but perhaps that's what's causing my continuin POTS symptoms. Even with meds my BP is hovering around 89/60 today.

Denise

Hi all,

Do any of you have problems with your immune system with your dysautonomia? I'm just wondering if it's a part of it. I was just released from the hospital. I had a septic infection, they think my portacath was the cause. They removed my port and put in a pick line for my antibotics. I seem to get every bug that's out there and now am getting bacterial infections. When I was admitted I had a high fever 103.7 but my white count was not elevated. Seems weird to me. Anyone else deal with this?

Denise

I totally understand where you're at! I have been there myself more than once. Luckily for me my kids are now older and can care for themself so I just have to worry about myself and yet that's difficult too! I agree with others that you should find someone to talk to who deals with cronic illness but there are psychologists in most towns that offer help on a sliding fee scale and perhaps you could find help in one of those. I am better off now that I'm divorced since my husband had no sympothy for my disease and doesn't even believe it's real. I wish you luck in dealing with things one day at a time...sometimes one hour or one minute at a time..

Denise

Thank you Tearose, you are too kind!!

My appt is this Thursday Jan.6 and it is with a local specialist who also suffers from POTS. He had to give up his Internal Med practice because of his POTS. When I called his office to make the appt I was told I had to be referred, so I contacted my Neurologist for a referral. You would think my Neuro would want to see me first since it has been 3 yrs since I've seen him, NO, he did not. I'm not sure if I'm happy he saved me the money of an office visit or ticked that he wrote me off so easily. I hopefully will start getting the help I need. I have been making a list of "things wrong with me", if I don't I will never remember to tell him all of them. If it were not for this forum I never would have associated a lot of things to my POTS.

I'm currious about the tired thing. I've read in a lot of these posts where some of you can't work and have difficulty getting out of bed. Has it always been that way or was it gradual? I'm always tired, sometimes more than others, but thankfully I am still able to work. But unfortunately, because I use my energy for work I don't have much leftover for my kids. Guilt..Guilt..Guilt!!!

Ginger,

While taking Florinef make sure you get your potassium checked. I wasn't followed up properly after being put on it. Two months after I started taking it I had to have an emergency appendectomy and was given 2 bags of potassium in the ER because mine was so low.  Good Luck!

Thanks again everyone for being so kind and helpful!!

Happy New Year,

Jill

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Jill,

I found the doctor you are talking about tonight online. I'll look forward to hearing how your appt goes! My parents live there and trips could be arranged if everything lines up right. Good luck!

Denise

I can have a couple of drinks most times. For me it's a matter of how I feel beforehand. I haven't drank enough to have a true hangover for many years...I have to much pain already to do that.

Denise