Gerrik1

I have a question for everyone. I was recently in the hospital and my PCP and I both feel I had some kind of POTS flare-up similar to a Fibro flare, when all your systems are going crazy and every symptom is active at one time. My PCP put me on IV's but we were not sure what else to do? Has anyone gone through this and can give any suggestions? Any help would be Greatly appreciated.

My McAfee internet protection is telling/warning me that DINET is a bad site and I should not come here. Anyone know why?

Not good with sitting here unless my legs are up. If they are down I can't last long before the pain starts.

Hi Becia, I have flown some since I have been Dx over 10 years ago. And it has gotten a little harder each time but I can still do it. I wear my support stockings, I hydrate myself a lot before the flight and during the flight and that makes me have to void so I have to get up and move which is good. On take-off my heart rate goes up and I feel my B/P dropping. I have to sit and deep breath and just try to relax. You have to give it a try or you will never know. Get wheel Chair transportation to your gate and then you can get on the plane right after 1st class. You will not feel as rushed. When you land get transportation again. That will help lessen your symptoms. Good luck with trying again.

Hi Bren, The first thing I can say is hang in there it will get better. But everyone is different, what surgery you had, time of recovery, how you were before surgery. I had emergency abdominal surgery from a blown pulp. Which then turned into a week later having emergency colostomy surgery after the 1st surgery blew apart. I was in the hospital's (2) for 3 weeks. When I got home I had home care to my incision which was partially open for 3 months. To say I was sick is small. My POTS flared up so much. It took months to get me back to were I was before the surgeries. Then 6 months from colostomy surgery I had it reversed. Was not as bad as first time. I didn't have an infected abdominal like the first time. And I recovered quicker from my POTS flare. It took time but I did recover and so will you.

Everyone in my family has been very healthy. At the end of my mother's life she had High B/P and her kidneys failed and they talked about dialysis but she refused it and she was to old for a transplant. o she went into Hospice.

Sorry i'm an oldie. no vaccine when I was young the 60's. Had Chicken pox at about 8 yrs old around Easter time. Remember being separated from the family during the holiday

I also use Ambien and it works very well for me. I have to take it before midnight. But I suffer from insomnia in stretches and it helps me through them. I am allergic to Benadryl and so I can not take anything with it in it.

Reading and gaming on the computer and DS Lite are my sanity. I use to cross stitch also but unable to focus on those small squares anymore. When I do gaming I like the ones that get me to think. The ones that I have to solve a problem before you can move on. Keeps my mind active. Also like doing word search games on my Kindle. I also have read many books since I got my Kindle, free books are GREAT.

After I was 1st diagnosed 10 years ago I stabilized on meds and did very well for 10 years other than only an occasional flair-up. But in the past 3 months I have has a full blown attack of the POTS again and my MD's are working on adjusting my meds. I'm not driving, using a walker and just having a hard time all around.

Been talking with other POTSies on FB and a few of us have noticed that we all have uncontrolablr High Cholesterol and Low Thryoid and are wondering if it is related to our POTS. I have had High Cholesterol since my 20's and it got worse in my 40's 2-3 meds a day and the numbers still not were they should be. Thyroid noticed low 4 years ago. And POTS diagnosis at 41 years old, 11 years ago. But I have always have had a low B/P since I was a child. What about others of you out there? Any Cholesterol or Thyroid troubles? Do you think they are POTS realated?

Ya, I do. When my POTS is acting up like right now my dreams are much more vivid and bad nightmares. Also my insomnia kicks in so when I do sleep it's not a good sleep.

My family Dr tried to get me into see Dr. Yates at the University of Pittsburgh but my insurrance would not allow it So secind choice is Dr. Chen At The Balance Center. These are the only 2 places in Pittsburgh for dizziness. I'll copy the information you posted and take it with me. Thanks!

I have had increase dizziness for almost 3 weeks now and was in the hospital for 9 days. I blacked out 5 times at the hospital and one time at Physical Therapy (were I was getting Vestibular Therapy) for dizziness. Since Blackout last week no more PT. The Balance Center is a AGH in Pittsburgh, PA. I will have to be off ALL medication except Thyriod, stomach, and cholesterol for 48 Hr. before testing. That is a lot of meds to be off for me! They will be doing a : Hearing Test Rotary Chair Test Infrared Video Goggle Positional Test (IRV) And I will be seeing the MD after the tests to discuss the results. I was there 10 year ago when I was 1st diagnosed with POTS and has The Rotary Chair test and an Elctronystagmography(ENG) (warm & cool water into ears) I falled the ENG. At that time they said I had Vestibular Dysfunction in my ® ear. Gave me Antivert and sent me home. Now I feel worse than 10 years ago with the dizziness. I feel it's a flare-up of the POTS and the Vestibular. Dors anyone have any experience with any of this? Hoe do all of you deal with your dizziness?

Untill recently I would volunteer everu Sat. night at my local Hospital ER waiting room from 5pm-9pm by the time I get home settle down take meds ectra. I am unable to sleep and more symptomatic on Sunday. I am now in a active POTS relapes and all my symptoms are bad and I am not volunteering at all.

I use to try to explain the POTS but then I just said I have low B/P or Migraunes which I do. But since my POTS have relapes and gotten worse the last few months I say I have a Heart condition and at 51 most people can understand that and go with it.

@mattgreen - I've had scopes before and they found nothing but all of the sudden one Sunday I woke-up to severe Lower left abdominal pain. Went to hospital and after testing they said I has a Diviticuousis that had ruptured. And my interstines had opened up. The cut out the opened up area and sewed me back up and within 1 week I blew apar again at incision site. So with in 1 week I had major surgury in the same area 2 times and the 2nd time a colostomy for 6 months. Never had a diviticui before or after and they told me the ruptured one was the only one I had. But now I really have to watch not to get constipated.

Major GI issues here. I even had a colostomy for 6 months after my bowels blew open in me. I have terrible constipation trouble and really have to watch. I take Fiber gummies everyday andstool softeners. And eat a high fiber diet ans naturally drink all my water.

I just started wearing them again and am also looking for other colors. Was going to ask the same question for place to find them. Thanks for posting site "I hate bananas".

I was recently hospitalised on the cardiac unit in the hospital and was automaticly put on a cardiac diet AKA - No Salt. Boy could I tell the difference. I got a hold of my MD right away and got her to add salt and gatore aid to my meals and it made a difference.

It is so good to know I am not the only one out there like this. I need to share this with my MD. Thanks ladies.

I also suffer from migraines and daily headaches and see a headache specialist. After tring many different daily prevenative medications to help the migraines we finnally settled on Zonagrane, it is a seisure medication but helps with migraines. It has cut my migraines from almost daily to about 1-2 per week. And then I have as needed medications also for when I get a headche or migraine.

I have been having more and more trouble when I dream that when I wake-up I can't figure out if it was a dream I had or if it's a memory that I am having. At times I feel like I am going crazy with this. I was just in the hospital and was telling my MD about it and she just looked at me like I was nutts. So do any of you suffer from this? I thought I would give it a try out there and see if it's a Dysautonomia/POTS thing.

Thank-you jkn9h and Katybug for posting. I can't believe there are others out there like me with the DREAM problem. I thought it was just stupid me. Or that I was going crazy. I am having more and more trouble realizing if a dream is a real memory or a dream. I was in the hospital a week and a half ago and was trying to discribe this to my MD and she just looked at me like I was crazy. So glad I'm not and that there are others out there

They could not tell me for sure but when I was diagnosed with POTS I also had surgery to remove a large tumor on one of my overies and I has endometriosis all over my uterus & overies. My MD had to remove the overy and my uterus. I was just 40. I tried to find out if it was connected to my POTS, I was so sick at that time but noone could answer me.