Daily Update Thread!

[louloutinks]

Just thought it would be a nice idea to have a daily update thread on how we are all doing - good and bad, meds, appointments etc

Today I am real tired (exhausted infact) with headache and high BP (128/110). I have an appointment next wedsnesday at UCLH in London and have had to call the local hospital to send over the MRI and full report to the London Hospital (as they are taking so long!!)

Want to discuss meds in London for my pots as salt and water is not helping. My BP is all over the place - high and low and want it sorted. Also need to go over the MRIs for thoracic outlet syndrome.

Yesterday was a really good day for me except for the AM. Had energy and felt quite good.

How are you all today x

[RockiesGirl]

Hi Tinks;

This week I have been doing fairly well. Sunday and Monday were my Yucky days Felt like passing out a lot. Pretty much did once.... Then I have felt better. I do not understand it.... But I really did a lot the few days before and pushed myself, so maybe that is why. I have been soooo hungry and actually craving salt like crazy. I go upstairs, pour some out of the shaker and lick my palm.

I am sorry your BP is all over the place...wish I could send you a magic fix it. Take care!!

[louloutinks]

Hi Rockies girl.

Strange how the days can be mixed - good and bad! Just wondered if the salt helps you and what it does to make you feel better. All it seemed to do to me was make my hands swell in the mornings!I had to mix mine with drink - dont think I could have eaten salt neat

I have been really silly today and have not eaten a thing (wasn't good earlier, went out to sons summer scheme party, home and had headache so didn't want food) now it is 7.30pm, and I HAVE to eat as my eyes feel wobbly and weird and I am shaky!!

[Allene]

Oh man I'll probably be in here every day haha! Today has been awful for me. I woke up feeling like crud, but I had to go do the weekly cleaning I do for my family. I get paid for it, and since I have no other job I can't just pass up opportunities for money. I had to sit down and rest every few minutes while I swept, vacuumed, mopped, and dusted. I also had to kneel at the bathtub to wash the dog. I would have washed her in the kitchen sink (she's a chihuahua so she'd fit) but the sink was full of stuff at the time. I really am not sure how much longer I can keep this up. My symptoms are getting worse and worse no matter what I do. Today I just felt so faint all the time. I'm feeling better now that I've had the chance to sit down and get a little food in my system (I did eat a bit of a breakfast before I went and did my chores, but it didn't seem to do anything for me today where usually a small meal will help with my energy levels.) The upside was that I got in some bonding time with my dog (: She doesn't like baths, but she's always so cuddly afterward! She's an odd dog lol

I think I've earned a shower and nap!

[misstraci]

good idea for a thread tinks

I've had an awful past two days to be quite honest. I sometimes look at myself and think, "wow, I'm a strong individual". I don't think I know many people who would walk around feeling the way I do. Most go home to bed with the sniffles so, Oh my goodness, what if they had all day pre-syncope?! Not that I want to be out and about feeling like this but I have no choice, I have to work.

I went for that Bowen therapy on Wednesday and now I don't know if this extra bad feeling that i'm feeling the past two days has something to do with that, with hormones or just a coincidence all together, eh.

Gotta keep pushing through!!!!

[potsyturvy]

Sad to hear so many people are having a rough time right now . I wish we could all just get a magic cure for dysautonomia! My day has been a little frustrating. First, I had to call the lab today because they wrote that my catecholamine test was done in the upright position and it had actually been done in the supine position. So my results were out of the normal range for supine, but since they wrote that it was an upright test, it showed that they were normal. It took about 30 minutes to get that straightened out.

Next, this is half-good, half bad stuff, I went to the hospital to do some applications for volunteer work there. I'm really excited about volunteering and am hoping I get accepted to help in Diagnostic Imaging but I'm not sure since I said I can't help with transporting patients. While I was there, I had to do a skin tb test and some blood work to make sure I'm not contagious. I had blood running down my arm after the tb test and after the blood draw, my blood soaked through the cotton ball and bandaid. I've also been having some excessive bruising lately (It looks like someone beat my legs with a baseball bat). So I guess there are some new symptoms I need to get checked out. So there you have it, some positive and some negative

[louloutinks]

Compared to Allene and misstraci I have had a pretty un pre-syncope day except for the morning!! Mine always is real bad in the morning then just a few times during the day usually. Sometimes I can get it all day but that is when I am only real bad.

Agree with how we deal with this thing Traci - we must be pretty sturdy to get through it sometimes! My BP and GR are sitting nicely right now - 104/74 HR64. Am sitting up in bed and it has just turned midnight. Cannot lay down right now as when I do I am in pain through my TOS in my neck but hey

What is catecholamine test potsyturvy? (like the name!)What relation does it have to pots (if any?) I have watery blood too and I bruise real easy, if I have an itch, boy I am left with scratch mark bruises. Be great if you could get the job, keep you mind and body active, so good luck with that!

Well I finally managed to sort out the transfer of the MRI scan and report and it is going up to London ready for Wednesday. I am due to see a rheumy - can someone enlighten me what they deal with as the first time I saw one I just told them about my joint problems. Thing is,I am a bit literal with docs....dermatologist - skin, orthopaedics - injury, rheumy - joint and muscles, nephrologist - kidneys etc.

But my local doc questioned me why I did not tell the first rheumy about all my rashes - I said 'because he wasnt a dermy' (d'oh).

Would they know about pots, TOS, kidney function issues, rashes...not sure why I am seeing a rheumy to be honest

Hope you all have a good day x

[hholmes13]

Sorry to hear so many people are having rough patches. Unfortunately, I've had a pretty cruddy week too. I got excited because Tuesday was the best I've felt in such a long time. The next day was back to more normal day with lots of symptoms. I'm excited though, I am going to go for a nephrology consult in a little over a week. I want to see if there's something going on there that could be contributing to my issues.

Tonight has been a bit of a pain though...I got a phone call from my hubby as I was leaving work. He found out that he was exposed to scabies this week at work. Yuck yuck yuck!! I get so icked out by stuff like that. I have been so dizzy/exhausted all day and I've been spending my evening washing all the linens/clothes and vacuuming like crazy. The odds of us having it are pretty slim, but we can't take any chances. I was looking forward to relaxing this evening, but that hasn't happened yet. On the bright side, my house is getting really clean. This was another confirmation for me that I will never ever work in a hospital setting. I have to call the docs tomorrow morning and see if they want my daughter and I to get the same preventative treatment that my husband got.

Well I hope everyone has a great weekend!

[stacdliw]

You'll be sorry that you asked! I have had the month from ****! The moderate/severe pain right below my sternum, which no doctor knows the cause, has started radiating to my back as well. Though pain medicine eases the worst of the pain, pain still lingers, especially when I stand, so I am bedridden for many hours. In addition, I've lost my appetite, which is rare.

I went for a second opinion since my original GI left for another university position. Luckily, he, too, could find no definitive reason for by pain, though he

speculated it may be related to my gastroparesis or Autonomic Neuropathy. The best news is that he assurred me that whatever the cause, it "isn't dangerous". Before I left, I asked him if he would become my new GI and he said, "Yes, you are a very complex case. I like challenges." Yep, didn't need a doctor to tell me that my health problems are complex.

At the end of July, my husband and I traveled to Denver to help our daughter move into a townhouse. I almost didn't go because I had been so ill with the pain, fatigue, and POTS symptoms, but I don't see her that often and decided to make the trip. I knew I made a mistake within 3 hours of pulling out of the driveway. Severe pain hit and there I was strapped in the seat unable to lean back because of all the stuff we were taking to our daughter. Even with pain meds, it takes about 30 minutes for the worst part of the pain to ease. It was horrible and there was my husband, in the middle of it, asking me rhethorical questions that he expected me to answer!!!! I finally blew, turned off the radio and told me to PLEASE be quiet and let me suffer in peace! Weird thing, with Day 2 pain, while I had pain right under the sternum, I was also have brief spurts of electric current type pain on the lower part of my abdomen. That definitely sounds like neuropathy! I haven't had that sensation again though. It takes 2 days out and 2 days back from Ky. to drive to Denver and I experienced that pain experience everyday. Not fun at all.

I did have a couple of good days, but then eating out at restaurants caught up with my gastroparesis. On moving day, I woke up so nauseous I couldn't even hold my head up. For 5 hours when there was no mattress to lie on, I had to lie on the hardwood floor sick as a dog. Took 3 days to get over the nausea.

When we finally got back to Louisville, I slept for 28 hours. That's right, 28 hours straight with breaks only for the bathroom and drinks. I get hypersomnia often, but this breaks my previous record of sleeping 19 hours straight.

Of course, I continue to have my daily pain attacks. Weird thing, they are generally initiated by liquids! I never know when or where they will begin. Normally, I have to take 5mg-10mg of oxycodone to ease the pain, so that keeps me housebound. The pain may or may not return in 4-5 hours. I've had the pain last up to 18 hours. Last Saturday, our of nowhere, I had excruciating sharp shooting pain in my back around the hip area. Took 40 minutes to ease the pain with 15 mg of oxycodone. After the episode, I was totally exhausted.

I'm normally an upbeat and optomistic person, but this last month has really tested me. I'm soooo tired and sick that I actually went 10 days without bathing!!! Of course, I did nothing to get very dirty, but never in the past, would I ever go 2 days without bathing. But little things are just overwhelming me right now. I went to the Pain Specialist yesterday and you have to report new symptoms, so I reiterated this story. When I left, the doctor just patted my shoulder and kept saying over and over, "You will get better, you will." Thing is, I don't know anymore. Things have gone down hill so much in the past couple of months that I'm not that hopeful anymore. Is this my new life-- never knowing from one day to the next what new symptom will occur? And will this new symptom be even more debilitating?

Sorry for being such a downer, but I really needed to vent to those who understand. It's just so overwhelming. I was a former school speech pathologist and I always get depressed around the start of school because it reminds of how much I have lost. Thanks for listening! Bev

[icesktr189]

This month has been horrible for me too. I have severe swelling in my sinuses and ears, so I have constant vertigo and dizziness. Then in return, it turns my POTS into a living nightmare. I passed out 3 times this week and all I want to do is sleep. Migraines have been really bad and just exhausted from taking care of my daughter because my fiance is back at work full time now.

I know if I could get my sinus issues under control, i would feel A LOT better but I have my top two wisdom teeth coming in also, so its a lot of pain

Hopefully my next post will be better

[potsyturvy]

Dani, it's interesting that you have problems with vertigo too. Whenever my allergies are bad, I get horrible vertigo. I'm so sorry to hear that you are having such a rough month! I hope things clear up soon!

Tinks, the catecholamine test is where they check your adrenaline and norepinephrine levels. A lot of us with POTS have trouble with adrenaline regulation when standing. I did the test in the supine position and my adrenaline was still pretty high, but I can't get a doctor who will pay attention to it, not sure what is causing it. Some doctors say that one of the guidelines for diagnosing POTS is an increase norepinephrine on standing. Not sure what they can do to treat it or anything though. I personally take an SSRI for adrenaline rushes and a beta blocker for IST.

[Allene]

Some doctors say that one of the guidelines for diagnosing POTS is an increase norepinephrine on standing.

How do they test this? A blood test? I'd never be able to be tested like that D: I hope nobody ever orders it for me! I faint when I get blood taken if I'm sitting up. Sometimes even if I'm lying down.

Anyway, today was much better than yesterday! I only have a mild headache, and I only had pre-syncope twice! I got to go to the local bookstore/cafe with my family and I didn't feel bad being on my feet a lot and crouching to look at books. I've been mulling over this for a bit, but I finally came to a decision to try to find another job. I want to keep trying. Partly because I really need money, and partly because I don't want to give up so easily. I guess I'll try a few jobs before deciding that disability is my best option. The bookstore I went to is hiring, so I'm going to apply. I'm also going to apply at the movie theater in town. Until I can get a job, I'm going to go back to my old job and see if they need another substitute (I used to work at a daycare. They always need subs). That way I'll have some kind of income until something more steady comes along. I really don't know if I'll be able to do it, but I do want to try.

[icesktr189]

I think the vertigo and dizziness is from my sinus and ear problems putting pressure on my tubes in my ear. I also have fluid build up i REALLY hate allergies and for me they just came out of nowhere. Hope everyone starts feeling better soon!

[HopeSprings]

I like this thread - nice to be able to just say.... whatever. Well, I was doing better this past week with the dizziness/weird head feelings and then BAM! my period hits and it all comes back. In addition to the increased dizzy feeling, that weird bug spray chemical taste is back in my mouth. WHAT ON EARTH IS THAT?? So I've come to the conclusion that on average I have one decent week per month - (usually the one right before my period). It's amazing how much clearer I think, how much more I can do. It's not 100%, but like 65% better - If I could stay that way, I'd take it and be happy. I hate this.

[potsyturvy]

Allene, they can do a blood test or a 24 hour urine test. The 24 hour urine test is more to test for pheochromocytoma though, I think. The one for POTS is where you lie down for 30 minutes in a dark room and then they take your blood. Then you are supposed to get up and they take it while you are standing. I've heard of people doing it on the tilt table before too. I'm still pretty new to POTS, so I'm not sure which way is "right". My doctor only ordered the supine test though, but he didn't really know anything about POTS. I'm glad to hear you were having a better day! Hope the job works out for you!!

[GingerA]

Thanks for the thread. I needed a place to vent. Today has been really bad because I have been awake for 48 hours with my Dad who left the hospital Wednesday against doctors orders and came to my house because as my sister said "the rest of us have to work." (I wish I could work) Anyway, I finally got him back to the hospital yesterday but he insisted on my spending the night at the hospital with him. By this morning my brain fog was so bad I am not really sure how I got home except that God was doing the driving. I slept this afternoon but now I am so weak and confused that it took me 2 hours to try to feed the boys. Finally my 14 year old called my mom and she got take out. I am so tired that I feel like I can barely type much less sit here but I am too tired to get up and make the walk to the bed. My toes are beginning to get numb so I know that the pain will be here soon. The worst thing is that the family expects me to go back to the hospital (that is 40 minutes away I might add) tomorrow to sit with Dad. I have no idea how I'm going to do it.

[abnel]

Thanks so much for starting this thread. I also need to vent.

The last 3 weeks have not been good. I developed a bacterial gastroenteritis from contaminated water and every time I think I'm over it it flares up again, usually every 3 days.

I was in the ER last night with breathing problems. It turns out my electrolyte balance is out of whack (potassium too low) because of the diaorrhea. This is in spite of me drinking lots of electrolyte drinks AND taking 2 potassium supplements a day because of Florinef. After this experience I would recommend to anyone with a chronic gastro infection to get their electrolyte levels checked, especially those taking Florinef which causes the body to expel potassium.

My dad was just hospitalised on Friday after suffering 2 heart attacks and everyone in the family (even some friends) have already been to see him except me. I am very down about the fact I can't be there right now.

I am feeling so weak from the gastro and the breathing problems that I don't feel well enough to leave the house. I am praying for a turnaround soon so I can visit my dad soon, before he gets home from hospital.

I hope everyone's week improves as we're all going through a lot at the moment.

[louloutinks]

I had quite a good day today thank goodness. Couldn't go in the swimming pool with my son as I had a headache but hey he still had fun.

However, I noticed a few black mole looking things on my butt today. A while ago I noticed that I had some come up under my breasts. I was only looking as I have been really itching lately and have been coming up in huge bruises in the places that are itchy and so I was having a look. These 'moles' were not there a few weeks ago. When I was young I only had one mole and now I seem to have acquired lots of them along with lovely brown freckly things too!

Any ideas?? Not sure if the itching and bruising is down to my kidney function?

[louloutinks]

Seems like everyone is having a pretty hard time of it on here right now so sending you all hugs and heres hoping for a better week ahead!!

And by going through the threads, it seems that a lot us do not have much support from all our families really - is it because we don't look sick and we just deal with this autonomic dysfunction?? Such a shame really.

I am having to go over my writing today as my hands are not typing what my brain is thinking lol....for autonomic I wrote something like cnatmco(what the !!)....brain please get in gear!!

Hope you all have a better day today

[HopeSprings]

Well, my husband was home sick today... and I have both kids at home now that camp has ended... and I'm trying to do my work... and I'm a dizzy mess. Fun day. Yes, this is my chance to whine and I'm gonna take it!

[corina]

had a bit of an emotional day yesterday as they came to pick up my electric wheelchair. after starting octreotide i got SO much better that i didn't need it anymore. it felt so strange, as last year i was so bad i could harldy get out of bed let alone go out in my wheelchair. so now it was time to let go which is great and scaring at the same time. never could have thought my life would change so drastically. not cured but doing SO much better, i've got a life again and enjoy it to the fullest!

corina

[icesktr189]

had a bit of an emotional day yesterday as they came to pick up my electric wheelchair. after starting octreotide i got SO much better that i didn't need it anymore. it felt so strange, as last year i was so bad i could harldy get out of bed let alone go out in my wheelchair. so now it was time to let go which is great and scaring at the same time. never could have thought my life would change so drastically. not cured but doing SO much better, i've got a life again and enjoy it to the fullest!

corina

Hi! that is great you are doing so much better? If you dont mind me asking, what is octreotide? I did a google search, but it was a bit confusing.

[louloutinks]

Well, my husband was home sick today... and I have both kids at home now that camp has ended... and I'm trying to do my work... and I'm a dizzy mess. Fun day. Yes, this is my chance to whine and I'm gonna take it!

Sometimes helps to come on here to have a vent!

[louloutinks]

had a bit of an emotional day yesterday as they came to pick up my electric wheelchair. after starting octreotide i got SO much better that i didn't need it anymore. it felt so strange, as last year i was so bad i could harldy get out of bed let alone go out in my wheelchair. so now it was time to let go which is great and scaring at the same time. never could have thought my life would change so drastically. not cured but doing SO much better, i've got a life again and enjoy it to the fullest!

corina

Hi Corina, hope you are feeling ok? Is it becasue of pots that you use a wheelchair...(hope you dont mind me asking!)I like your positivity!

[potsyturvy]

Just wanted to mention, I love this thread! I had a geneticist appointment today and got diagnosed with EDS type 3. It was pretty exciting in some ways to get the diagnosis, so I kind of know what is going on with my body! I am supposed to go back to my ep-cardio next week and am hoping he will take the diagnosis seriously. He keeps telling me I can't have hyper pots and hypovolemic pots both because I haven't been diagnosed with a connective tissue disorder, so now hopefully he will test me for hyper pots! Just had to get that off my chest! Things are looking up