Hate To Be A Downer On Easter, But I'm Soooooo Sick

[LindaJoy]

Hi, everyone. I've been posting a lot lately. I'm soooooooo sick. Can anyone give me some advice or encouragement? I really feel like I'm on my last leg here.

It started on March 12th with bladder pain that got worse. It triggered my POTS. Two hospitalizations (I've said all of this in other posts, I'm sorry for the repitition), 12 total days IN a hospital and a Cleveland Clinic visit, and I"m worse than I've been. I'm having POTS episodes at least two or three times a day, and in the middle of the night. I'm taking Ativan twice a day (.25 each time). I'm shaky all of the time, I've lost my appetite. I've also lost 11 pounds in that time. I weigh only 112. I'm scared. Between the tachycardia I have a lot now (140 beats a minute this morning when I got up) and my inability to eat much, I'm wasting away.

Dr. Fouad, at the CCF, put me back on Florinef, but I haven't gotten it yet. We just got back yesterday, so I haven't had the prescription filled. I'm also afraid to take it, for fear it will just make me worse, like all of the other meds. I've been prescribed lately. I took it last year and gained 17 pounds in two weeks. I couldn't urinate at all by the end of the two weeks. She said this is a lower dosage.

Do you think the Florinef is enough to help me? I am sooooooo bad right now. All I want to do is cry. I'm afraid to be alone. Actually, I'm afraid to be with anyone but my husband because he's taken care of me this whole time and done such an amazing job. I only feel safe with him.

To top it all off, I STILL have the bladder pain! I can't have the testing until May at the CCF because they're too busy, and Dr. Fouad said my POTS probably won't be under control under the bladder is. By that time, I'll have blown away.

Any advice would be GREATLY appreciated. I'm going to try to eat more. I just finished with three 1/2 slices of toast and some pudding for breakfast. It's hard because foods taste bad right now, and many of them hurt my bladder.

I just can't believe how many doctors later and I'm a worse mess than when I started.

I'm sorry to bring a downer to your Easter. I'm just so scared and sick, I need to hear from you all.

Thank you.

LindaJoy

[Dizzy Dame]

Linda, I can hear the fear in your post. I'm so sorry for all you're going through! For the first six months after my diagnosis, I had horrible problems with anxiety (this illness is enough to drive anyone over the edge). I was scared to take my meds, terrified of being left alone at all, terrified of hospitals etc.

The only advice I can offer you is to meditate or pray, or try to find another way to center yourself. That's what I had to learn to do, just go within myself to the center. My body would be spinning around me, but since I was in the center, I wasn't moving at all (kind of like a wheel spinning). Over a long time, I learned to do this all of the time and now I'm not so scared anymore.

I'm glad you have a husband who'se supportive, and that the doctors are paying attention to you, even if it's not as quickly as is necessary. I really feel for you, and hope you come through this allright. Also, I lost a lot of weight when I was first sick. I had esophogeal spasms which kept me from being able to eat. I drank Ensure three-four times a day and it kept my weight stable. It's really good for you, and the taste grows on you after awhile.

((((((HUGS)))))))

- Lauren

[avais1]

I know you are sick, but HAPPY EASTER!

I had a few bad spells myself last night. KNOW THAT YOU ARE NOT ALONE. Everyone on this board has had health issues, severe ones, or we would not be here. And I know that there are times where you might feel like you are dying, or are even convinced that you are. We have all felt the crippling fear that you are dealing with. For me, I take comfort in knowing that all of you are here with me. For example, last night, twice, I woke up and rolled over. My heart shot to about 150 and I had an adrenaline surge most professional athletes would pay for! I was nauseated, my palms were sweating, and when I tried to get up to make it to the bathroom, I laid down on the floor before I fainted. I laid there for 15 minutes, feeling like death was coming, waiting out the storm. But I thought of everone on this board, and you were all there with me, through the wild ride. I knew if I held on, that this too, would pass. I held on, like all of you do every day.

THIS, TOO, SHALL PASS.

We are here for you. I am with you in spirit, sitting right next to you. I know it is scary, but take comfort in knowing that we are all still here, fighting the battle with you, and you are most definitely NOT alone.

P.S. About the bladder thing - is it possible that some GI issues are affecting your bladder by pressing on it? I had a problem with some bladder infections, and uncomfortable bladder issues 2 years ago. I found out that I have a redundant colon (means size EXTRA LARGE) , and that both my small and large intestines swell due to blood pooling in them (I literally look 7 months pregnant after I eat). This was swelling them to an "unnatural size" and they were literally pressing on the bladder wall. I now take lots of Gas-X, water, and fiber, and it helps some, but unfortunately there is nothing that can be done about the swelling.

[Ernie]

Hi,

When I was hospitalised it took me 2-3 weeks to get back to baseline (I was bedridden all the time but much worst after every hospitalisation.)

[Poohbear]

Hi!

I'm very sorry you are having such a rough time right now. Please try not to feel like you are being a "downer" because you are asking for support on Easter....it's a holiday but all of us here know that our bodies don't distinguish special occasions like our minds might .

I can hear the fear and frustration in your post too. I wish I had some good answers for you. We are all so different. For myself, when I have flares similar to what you are describing it is sometimes made worse because my potassium or magnesium are low (even the low side of the "normal range" are bad for me and cause me to be symptomatic). My thyroid and other hormones can also play a factor. I'm assuming since you were hospitalized they checked all of these but I hate to assume anything these days within the medical community. You may want to look at copies of the labs yourself to see if you are on the low end of any of these tests.

If your potassium level is good then trying the Florinef again in the lower dose may help you.

In terms of the fear you feel and not wanting to be left alone--I've been there too. I live alone so most of the time I have no choice but "go it alone". The things that help reduce my anxiety are coming to sites like this and chatting with others, writing, watching tv, putting puzzles together, coloring.....things that help distract my mind and keep me busy. Granted it's much more difficult when you are in high tachy spells and need to lie flat. If praying is not your thing or doesn't help then maybe try daydreaming.

Many times with fear we have to push through it. Your fear is understandable and yet, most likely, your husband won't always be able to be around you so plan for your safety as much as you can. Maybe carry your portable phone and/or cellphone with you at all times...think of things you can do so that you can get help quickly if you need to. If you are prone to needing to call 911 then go to your local ER responders and explain your situation so they will be a bit familiar with you.

I hope something I've said here will help you. Please know you are not alone!! It's hard when you experience spells like this but you WILL have better days so hold on.

[Roselover]

Linda, you have been on my heart and mind. In fact, last night I dreamt about Dr. Faoud and I've never met her! I think it is just because I've been thinking about you and asking many of the same questions you are asking and I want some answers - so I dreamt some up! No - not really answers - just dreamt I was getting some!

You are not alone. I'm going to send you a PM if you want to call me.

Sending you a big hug,

Melanie

[Jersey Girl]

Dear Linda,

I am so sorry that your symptoms are so severe right now. When I was first ill 4 years ago, I tried everything and looking back over the years, I think the only thing that helped initially was staying in bed and sleeping alot of the time, taking neurontin for my severe headaches,stiff neck,chest pain, and other assorted aches and pains. I had to very, very, gradually learn how to walk again on my own by hanging on my daughters arm and walking the driveway extremely, extremely slowly until my tolerance grew day by day over 1 1/2 years. Only then was I able to try some exercises such as swimming and exercise machines to strengten my leg muscles. I watched--actually listened to alot of television because my eyes could hardly stay focused on the set. It really stunk. I was encouraged to do more than I was actually capable of before I had a diagnosis, but was glad that I took the time resting in bed trying to give my body a chance to heal itself. I took B-vitamins and tried acupuncture and massage therapy to help me deal with the symptoms. I was hoping for the "cure" but had to settle for a temporary improvement in symptoms with such. I had to hang onto the hope that someday I would be "better" and I still do. I have had improvement over time (the best one can hope for with this crazy condition) and am thankful for less intense symptoms. I am extremely appreciative of this forum to help me cope and know that I'm not alone. I really hope that you will find some answers to help you. I had terrible reactions to just about every medication that was tried as well. Martha

[Gena]

HI LindaJoy,

Just a quick note to say I really feel your pain and fear in your post. I have felt as awful as you describe before, and it DOES get better. When you're in that horrible place, I know it seems like it will never get better, but it does.

I really hope and pray the florinef does well for you. You should probably start out with a small dosage and work your way up. Hopefully your doctor will guide you on that. Sometimes it's a lot of trial and error until you find the right med.

Have you tried a beta blocker for your tachy? I have tried several and most of them made me feel half dead and really lowered my BP too much. However, I finally found one that worked - it's called propolanol (sp?), and I think the brand name is Inderal. I take a quarter of a 20mg pill and it really does the trick - it always helps with my tachy and arrhythmias. Because I take such a small amount, I can take it on an as needed basis.

In the mean time follow some of the other good advice (check magnesium and potassium levels, meditate, pray, and most importantly instead of dwelling on all of the things going wrong, try to focus on the positive things in your life. I find that if I write down positive things about myself, my body or my life and say them out loud I start to feel better, even in the darkest of hours. Sometimes it might be hard to find positive things when you feel like you're dying, but it really does work. I also love to watch funny movies, as it helps take my mind off things. And the endorphins from laughing help the body heal!

I am sending you big hugs your way. I will keep you in my thoughts. Take care and hang in there.

Gena

[LindaJoy]

You all are so awesome, to be here to help me, even on a holiday. Thank you all sooooo much. I'm sitting here crying, I feel so overwhelmed. I love you guys!!

I had to go to the ER today, as I am going through withdrawal from trying to come off of Ativan too quickly. My doctor didn't give me a schedule to follow on how to safely exit the medication, so my anxiety was through the roof. I got a schedule to follow now, and we're moving back to my mom's house for a little while, since she's closer to the hospital, in case I have any problems. I can't believe my body is addicted to ativan so soon, but with POTS, you never know. They were really nice about it at the hospital, too, which made the situation better for me.

I thank all of you for your words of support and encouragement. It is comforting to know that there are others out there like me. You know, last night, as I was having a POTS episode, complete with tach, the shakes, blood pressure all over the place, etc., I wondered how many of you were going through the same thing at that moment. It may sound weird, but that brought a sort of comfort, a sort of normalcy, to the situation for me. Weird, huh!

Well, we're off to my mom's, but I wanted to write and thank all of you for being there for me. That's one thing this forum does so well--it makes you KNOW you're never alone.

Happy Easter, again, everyone. I'll write soon, when I get back home. Don't know when that will be.

LindaJoy

[JacobyD]

I'm with Ernie.

I'm still housebound and whenever I have a hospital stay (lost count) it takes days to recover - even if its an outpatient procedure. Please taper off that Ativan very slowly. The larger the cuts you make, the greater the shock to your system. Feel better soon.

[bttrflyamby1981]

Hi LindaJoy,

I'm sory you are having such a hard time. I haven't had many problems with my bladder, so I'm sorry I can't relate. My problems are from the other end.

Anyway, Just wanted you to know that I'm listening and wanted to add another person to your support list.

Hope you get feeling better soon.

Amber

[Richland acres]

Lindajoy,

I am so sorry you are not feeling well. My daughter suffers from anxiety and possible pots. I know its so hard to try to calm down and go through. I will keep you in my prayers. I do hope that some relief comes to you.

Know we are all thinking of you and wishing you the best!

Brenda