sandymbme

Just sending you support and love!!!! It is hard and scary to be alone with pots, and the kids make it an even bigger challenge. Do try to take advaantage of any volunteer support you can get. I have folks from my church that will pitch in for rides to doctors or light housework when I am really in a bad way. It is a huge stress reducer to have some sort of plan in place for when things get hard. Hang in there! Sandy

I have had this happen and it is scary and horrifically embarrassing. I don't have any good insight, my doc says I do not have addison's. But I commiserate with you!

I just started IV fluid therapy three times a week. I think the fluids are doing me some good, but I am getting frustrated with how hard it is to get the IV started in the first place. I am a terrible stick and apparently have microscopic veins. The home health care nurse has suggested talking to my PCP about getting a port put in, and I was just wondering if anyone had any thoughts or imput? I am just a little nervous about the idea....

I found my PCP by interviewing a lot of receptionists. I explained I needed a doctor willing and able to co-ordinate care with lots of specialists, who was also willing to learn a lot about a rare disease. Then I went and interviewed docs in person. My PCP is not an internist or affiliated with a med school, but her background was as an ER doc so she has a broad range of experience. She is patient and open-minded, and does a great job juggling all my specialists. I think the key is just finding a great relationship with someone who is willing to learn.

Not enough sleep is a total disaster for me. But I can "crash" and sleep 14-20 hours even if I am getting enough. I am just worse off if I don't get enough.

In a bit of kismet, I stopped by my vet's office this morning and they just happened to have a six month old kitty they thought would be perfect for me. So currently curled up at my feet purring like a freight train is...Polly. She is a black and white beauty. And best of all for my financial resources, since she is a rescue from the vet she is spayed and totally up to date on all her shots and vaccinations. I feel perkier already, and more motivated to take care of myself than I have in a week. So hurray for Polly!

So friday I lost my dear sweet girl, my kitty-cat, Jezebel. I had her for 13 years and am panicking without her. On my worst days I could drag myself out of bed to feed her at the very least, and without her it seems like my fatigue is going completely out of control. I have been sleeping 16-22 hours a day for the last several days. I have also seen a major upswing in the frequency and severity of my migraines. I live alone, so with Jezebel gone lonliness is quickly becoming a major factor. Someone in my church offered me the opportunity to get a kitten today, and while on the one hand it feels too soon, I am kind of afraid to see what would happen if I go much longer without a pet. What are your thoughts?

This solution is DEFINITELY NOT for everyone here, and should NOT be tried without your doctors knowledge and input, but I find a caffeine drip can break my headaches when all esle fails, and I will be symptom free for a few weeks. (Which is a pretty long break for me.) I don't respond to triptans, and can't take what advil does to my GI tract, and tylenol and aspirin have no appreciable effect. Maybe because caffeine is a vaso-constictor? I dunno, but when I am desperate for relief it is the only thing that reliably works.

I was on lopressor for about a year, and initially had some good results with it. Fear will only complicate your condition, so try to stay as calm as possible. It did not seem to make my bp any lower, but it really helped to get my hr under control. I will think warm, positive thoughts your direction!

I left my marriage without a penny, I had to borrow money for the deposit on my apartment. It was hard and scary but I got through it, and you will too! Don't be afraid to ask for help. The smartest thing that I did was get a really inexpensive apartment. Even when I am sick and unable to work I can scrape together the rent money and keep a roof over my head. Just focus on the future, and how much it will reduce your stress level not having to worry about trying to keep anyone else happy, or trying to drag yourself to events you are really not up to attending. Hang in there!

I don't have EDS, but I have been seen at the cleveland clinic and firmly believe that some of the best physicians in the world are available there. I get seen at the headache and facial pain clinic by Dr. Mark Stillman. I had suffered from a migraine for 9 months that no doctor in columbus could make head or tails of. After just taking my vitals he knew right off the bat I was suffering from pots, and a TTT confirmed his suspicion. Stay committed to the process and hang in there. I will pray trhat the doctor you are referred to will be able to help you find lasting relief!

Thanks for the insight! It is somehow bizarrely reassuring that even some of the craziest things our bodies seem to do are things we share in common. Not that I would ever wish even my easiest symptoms on anyone else, but it is a comfort to know one is not alone in this! I will definitely talk to my PCP about a referral to an endo, I am feeling increasingly desperate for even a small improvement. I will let you guys know if/when I know anything!

As I said in an earlier thread, my salivary cortisol test showed that my hormones were totally off kilter. Normal range for progesterone is 75-270, and mine was at 11. I turned 34 just 17 minutes ago, and until having an endometrial ablation in april I was having normal periods with the assistance of ortho tri-cyclen. The women on my mother's side of the family all had normal periods well into their 40's. I still have my ovaries, so I am now really starting to wonder why the heck my progesterone was so low? (My PCP called it "freakishly low".) Is this just another autonomic missfire I can chalk up to pots? My PCP has started me on natural progesterone to combat this (just 25 mg to start out with), but I am wondering what would make my body stop making progesterone for itself?

BWAH HAH HAH HAH!!!!!!!

I have had my gallbladder removed (3 years ago) and still have symptoms just like yours! Have had all kinds of workups done and they can't find anything to fix. Had a gastric emptying study, have been scoped literally from one end to the other and have had soooo many abdominal CT's I glow in the dark! They will ocassionally find something (like I once had an intussuception of the bowel a few months ago), but for the most part the GI docs are all scratching their heads. I don't have any helpful hints, but can offer lots of empathy! BTW, how does one get diagnosed with small bowel motility issues? My pcp says it is clear this is where my problems are, but my gastric emptying study with the horrible atomic eggs came back fine...

Pots is my primary Dx, for the moment. My PCP is convinced that I have an underlying condition that if we identify it, we can treat it. I too, have massive GI issues, although a gastric emptying study did not shed any light on my issues. My TTT is the only test I have had that has ever given a conclusive answer, so for the moment I am just potsy, but we shall see...

I tried sleeping on a tempurpedic pillow last night and woke up with a screaming migraine! Never again!

As I mentioned in another thread, my divorce was final April 1st. The single most important thing you need to do is get EXCELLENT legal advice. (That is where I really made a huge error!) With ten years of marriage and 3 children, you are entitled to half of the marital assets at the very least! Contact your local bar association and ask for a referral to a good family law attorney, you can typically get a free consultation in you get a referral through the bar association. The attorney can tell you if you husband should be responsible for paying their fees, in which case their charges are not your problem. Remember and take advantage of anyone and everyone in your life who loves you and can help you- physically, financially, emotionally, and spiritually. Pots forces us to rely on others more than we would like, but gives you the opportunity to express gratitude on a daily basis!

Oh how I relate! My divorce was final on April 1st of this year. I got sick just five weeks after we got married, and from the start his parents always questioned my illness. I can't count the number of times his mother inferred there was nothing really wrong with me. He would go with me to every doctors appointment, but leave me home sick and alone to go out every night with his friends. In sickness and in health did not even last a year and a half. When I finally moved out (with NO help from him!) he told me I was "too poor and too sick" to make it on my own. I moved out and lost a lot, but gained back so much more. Ironically my health has deteriorated far worse, but now that he isn't holding me back I have a great church and a great network of friends and family to help. Best of all I never waste one moment of my precious energy trying to make him, or his parents, happy. I sincerely hope you can look at this seperation as an opportunity to think about what he does for you, and whether you even want HIM!

I had the salivary cortisol about two weeks ago. My results were in normal range for the first three samples, but my last one was below normal. The doctor said that this is indicitive of adrenal fatigue, that I had no reserves and exhausted my supply before the end of the day. Also of concern was the fact that my progesterone and my testosterone were VERY low. My doctor felt that the flourinef that I am on caused my cortisol to report higher than it would have otherwise, and started my on natural progesterone and DHEA. I wish I had more insight to offer regarding your results, but I really don't know a lot about this stuff!

Thanks for the tips! I will let you know how it goes!

Hey- congrats on a DX. Sounds a bit strange I know, but each piece of the puzzle gets you one step closer to an effective treatment. I will be keeping my fingers crossed for ya!

I always ask people to imagine the worst, most violent hangover they have ever had: Horrific nausea, headache, vomitting, diahrea, dizziness and room spinning upon standing, being unsteady on your feet and falling into everything, heart racing thrown in for good measure. WaLa: POTS!!!!!

I have soooooo often described pots as feeling like you are trying to do everything under water! (Or the world's worst, never-ending hangover!) My fatigue got to the point where I was put on adderall to try to give me some functioning hours back, which worked for a while, but eventually the fatigue came bleeding through it. So my PCP took me off the adderall because she said we were flogging a dead horse. That until we could figure out a way to combat the root cause of my fatigue and extreme weakness, (I have lost almost 80% of my body strength in the last 6 months) I should save the adderall for only times where it was vital for me to be alert. Like the long drives to see specialists. So no solutions here either, but tons of empathy!

As a recovering anorexic, the 30 pound weight gain I have had since the onset of my pots symptoms has probably been the hardest symptom for me to take. I could handle being thin, but relatively healthy 120, being 150 makes me crazy! I have not yet come up with a good solution, as my tolerance for exercise is minimal at this point. After a couple of longer hospitalizations in may and june, I have also lost so much body strength that exercise can be very depressing. But I will see if any of the great suggestions here can get me off my rump! Several of my docs have suggested yoga as something that may be easier to tackle, anyone here tried it?