Daily Update Thread!

[cmreber]

This is my first time in here, but it's really great to find a place like this! I was diagnosed with POTS just this year (it came on suddenly end of Dec/ beginning of Jan) and I'll admit it can be very frustrating! From reading everyone else's posts, it seems like having good and bad days just goes with the disorder. I think sometimes that can be worst of all. Like Tuesday I felt better than I have in a long time and then yesterday I was right back to feeling lousy again! I did want to put it out there, though, that I don't know how many of you have tried medication, but it was night and day difference for me once I started taking a beta blocker. I went from not even being able to take a shower or walk through the store to leading a somewhat normal-ish life again. I still have a long ways to go (& I do the other things like stay hydrated, take vitamins, eat a high salt diet, stay away from things that trigger symptoms) but I would definitely have to say I was feeling hopeless there for a few months and the Metoprolol seriously helped me get my life back! My doctor said not everyone responds to it (& of course there are downside and side effects) but I definitely thought it might be worth mentioning for everyone! Hope everyone has a good day today!

[cmreber]

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

Tinks,

It really is a shame because having support is so important. It is so easy to feel alone with this because you feel like no one understands. I have been truly blessed with a husband who has supported me all the way, but even at that, I still feel alone sometimes. I think you're right about ppl not understanding because we don't necessarily LOOK sick, we just feel awful! I have to say that people going through this are some of the strongest people because of how hard it can be, and its so nice to have places like this where we can all go to share and connect with ppl going through the same thing.

And I have the same problem with the typing sometimes when I'm tired! And finding the right word when talking which is maddening! (& since I write for a living both of those can be really aggravating! LOL!)

Have a good day!

[corina]

dani, octreotide is a med that's being used for some specific type of tumors as well as for acromegaly. research has been done to find the effects of treament of autonomic neuropathy, postural tachycardia and orthostatic syncope with octreotide LAR, also known as sandostatin. it's published in 2007 by Robert D. Hoeldtke, Kimberly D. Bryner

Martin E. Hoeldtke,Gerald Hobbs. it's been tried on people who didn't (really) benefit from the usual meds, like i did. it works wonders for me, from the moment i started it. as i'm the only one in my country on it (i'm in the netherlands) my doc ans would love to hear from his (american) collegues if they prescribe and how the results are. if you are interested i can send you the article via email.

tinks, i was in a (power)wheelchair for pots yes. in bed most of the time last year. lots of dizzyness, very tired, brainfog etc. couldn't go out walking, driving or what so ever. i am very thankful to have a life back. i'm not cured (when i stop the med everything comes back within about 4 to 10 days) and still fighting with brainfog and very bad memory but enjoying life again!!!

corina

[corina]

forgot to mention, octreotide has been discussed before. if you like to know more try the search button!

oh and for everyone who's interested in reading the article i mentioned, feel free to pm me and i'll send it via email!

take care,

corina

[louloutinks]

I had a geneticist appointment today and got diagnosed with EDS type 3. 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

Hi potsy, I was dx'd with EDS in Feb too and the pots was attached to that. What are the emboldened things above Potsy?

Tinks,

It really is a shame because having support is so important. It is so easy to feel alone with this because you feel like no one understands. I have been truly blessed with a husband who has supported me all the way, but even at that, I still feel alone sometimes. I think you're right about ppl not understanding because we don't necessarily LOOK sick, we just feel awful! I have to say that people going through this are some of the strongest people because of how hard it can be, and its so nice to have places like this where we can all go to share and connect with ppl going through the same thing.

And I have the same problem with the typing sometimes when I'm tired! And finding the right word when talking which is maddening! (& since I write for a living both of those can be really aggravating! LOL!)

Have a good day!

Hi Cm and welcome! I have one friend who has seen ALL my bad and good days- he came to London with me yesterday to see the specialist so it was good for the back up as I forgot lots of things that happen to me lol! Me too - I have complete blanks with word finding to the point that I forget what 'type' of word I was thinking of!!

Hi Corina,Wow you must have had it real bad but I am glad you are feeling much better and life is good again. I saw a specialist yesterday and told them things are getting worse despite salt and water and now they are sending me to London for TTT.

Why do you need a TTT to get meds for this? If they have done the poor mans tilt and they can see the effects then why do they not go from there? Or is it because there are different types of pots and they need to investigate and then know how to treat it?

[potsyturvy]

Tinks, Hypovolemic POTS means low blood volume. My ep-cardio did a cbc (complete blood count) and found that I was hypovolemic. The basic treatment for it is increase in salt and fluids to expand blood volume. Hyperadrenergic POTS has more to do with adrenaline levels I think. One of the tests is to check upright norepinephrine because it is high in Hyper POTS. People with Hyper POTS also tend to have orthostatic hypertension. There are usually more anxiety symptoms with Hyper POTS. I know a lot of doctors have different ways of classifying POTS types, but this is just one of the ways that the ep-cardio I see does it. Hope this helps explain it some!

[misstraci]

Hello guys.

I just wanted to say that the past four or so days for me have been great! I have felt almost like my normal self (almost). It was such a wonderful feeling to be able to think clearly, stand in the grocery store without swaying/being dizzy/lightheaded, play with my kids, etc etc. It's so funny, it's the little details of a person's daily life that are taken for granted and I was just so thankful for "normalacy" that most feel on a daily basis and think nothing of it. This morning I woke up and felt not so great but it always gives me hope when I have good days

Hope you all are doing well also.

[louloutinks]

Good to hear that Traci....just a shame it could not last longer!! My am's are the worst so I dread them but just when I start feeling less dizzy and tachy...the fatigue hits me - one thing or another eh!!

Hi POTSYTURVY....think I missed your previous answer but thanks for that. I answered another thread re pots type changing....my BP is getting high on standing lately. At first it was low, dropped a lot on standing, then I got a few odd rises of BP on standing and now it has got more frequent.

[louloutinks]

Just want to add that I have seen the local specialist about my MRI for thoracic outlet syndrome and he said it was clear. The idiots are sending me to physio for strengthening (this makes TOS worse due to compression). The London specialist said the MRI does not rule TOS out and is sending me to a neuro hosp in London. I have since noticed that I can stick needles in my left arm and cannot feel a thing - even though nothing is wrong!

[hholmes13]

Just wanted to add a positive note today...I think I may have found the right combo of medication! I just started a beta blocker this weekend, and it is definitely taking away the tachycardia. My only big complaint is how tired I am from it and that I feel like I'm going to throw up. Once the side effects go away though, I really think this will help. I've gotten periods of time here and there where the side effects have lessened and I feel almost normal. I'm taking 10mg of Nadolol in the am. My doc wants me to take 20mg starting this weekend, but I think I am going to stick with the 10mg dose. This dose has already made my resting hr drop down to 45. I think I'll end up in the ER if I double it! Anyway, I'm really excited. I'm hoping this will allow me to start getting back to my normal routine a little.

[louloutinks]

Hi Holmes, thats good news you have found a good combo. I'd stick at the 10mg - I wouldn't want a resting HR any slower than that either!

I am 42 now and was dx'd in Feb this year but when I was 18 I was put on a betablocker as my resting HR was about 120. The other thing was that I used to always get dizzy and faint too. Being young I just stopped taking it after some time. Not sure if this was pots that reared its ugly head at a young age or not.

Hope you carry on feeling good

[louloutinks]

BP 148/104 HR 112 morning standing. Sorry folks just typing this in for personal benefit!!

143/121 99pm

[RockiesGirl]

Sorry Tinks...didn't have 'watch this thread' turned on Salt sometimes helps, sometimes not. When I feel bad though I crave it. It just seems to help with my BP a little bit.

This weekend has been yuck!! I celebrated my 40th Bday on Friday.... I was so darn excited, nervous and shaking. Went to dinner after the party and passed out. Spent the next few hours in the ER with full body Tremors until they shot me up with more muscle relaxers than I have ever had. Of course told them about the POTS & they just looked at me with blank stares. Was released from the hospital early in the morning and spent the next 72 hours in bed.

Finally feeling better on Monday & wanted to see my boyfriend etc. We have been dating 4 years and he broke up with me. He has been really supportive up until now, but he says I need to get myself in order (quote) because he is getting the short end of the stick. Really??

On top of everything else... I am just really having a hard time!! Thanks for letting me vent and cry in my wheaties!!

[louloutinks]

Hi Rockies Girl - Happy Birthday for Friday gone!

What an awful time you had though and I hope you are feeling better. Have you spoken to your partner since and sorted things out - you need support not being dumped!! When I went to A and E here they did seem to know what I was talking about when I mentioned POTS.

I have found that salt barely made much difference. I added salt to my foods before I was told to take extra so when I did take the extra salt and fluids, I just found my hands swelled up.

My high BP seems to be lessening (still does go high) but not all the time and now my HR on standing is doubling.

This morning it went from 97/72 hr69 to 110/77 hr 141 and then to 132/95 hr 164 by walking upstairs. But mornings always seem to be worse.

[RockiesGirl]

Are you on a beta blocker or any other meds? My BP seemed to swing both low and high before the Meds as well. And salt seemed to not really help all that much then too....now that I think back on it.

I think for some people, mornings are really bad because they are trying to adjust from being Supine for hours at a time. Sounds like your body is the same.

My symptoms seem to progress as the day wears on....Not sure why.

Take care!!

[Yolaclover]

Hi friends! I'm back from along trip to Bulgaria and Istanbul. Boy was I scared to even get on the plane! It was very nice though, the flights were uneventful, I had a wonderful time with my kids at a beach resort and then my husband came, we went to a wedding and then we went to Istanbul together. I was gone for a month! I had some difficult days, but some good days, mainly I struggled with head aches and head pressure, only a couple of days when I felt very POTsy.

I'm down to 1/2 a florinef per day, I am now on Gabapentium for my head aches and head pressure and lower back pain. I'm only on second day! So far so good. Miss you all tons!

xoxoxxoox

[louloutinks]

Hi Rockiesgirl

No I am not on any meds as yet. I had the poor mans tilt at the start of the year and they said salt and water but it has not been helping. I saw my specilist 3 weeks ago and he is sending me to NHNN in London for TTT as my BP swinging high and low and the salt etc is not working.

Mornings are def the worst - seems to take about 3 hours of being awake to function better but I do also get the issues at night. Don't get me wrong, I still do get the issues in the day too, like yesterday I was out shopping and bending down, standing up etc had me getting real dizzy, by the time I got to the till I felt real bad, tachy and drawn.

All throughout the summer I didn't sweat (well only under my chin and one armpit) and I am finding now, say if I vacuum, I pour with sweat (and its much cooler here now). Wierd.

This thread has been handy for me as I have started a diary and used this thread to keep track!

What type of pots do you have RG?? I have heard of low flow, high flow, hyper but not sure what the difference is TBH.

Welcome back 718mom.

Glad you had a lovely time abroad (lucky you) was it lovely over there?? Also lucky that you weren't very potsy as that would have been a real drag for you.

[Yolaclover]

Thank you Tinks!

[RockiesGirl]

Hello Tinks Again;

More recently I have been diagnosed with Adrenergenic & Cholinergic Neuropathy as opposed to POTS completely. Which in all honesty, I do not entirely understand. They say it is Stage 1 to 2?? Before I was put on the Beta Blockers and even after if I go off them....I can't stand for more than a few minutes or I will pass out.

Recently though I have major tremors & the doctor again wants to switch my Meds. I try them tonight and will report. Toprol (& there is a generic) made my legs & hands turn blue, plus I was so unbelievably cold it was ridiculous. Bystolic has worked out much better, but now I have the tremors, mostly in my hands & neck but the hand-arm is very noticeable. Hence, the change in the Meds.

Alot of others on here have been helped with Beta-Blockers but equally as many on SSRI's or SNRI's or something else. Do not know what is "right" for you but maybe you could discuss with your Doc??

I am working with a Cardiologist for all my issues but I have read that there are many other Docs who can help....I just lucked out with the cardiologist. All that said, the man is sooooooooo busy, I barely ever get to see him and he is not an expert on POTS or whatever the heck else it is I HAVE ;o)

Hope all is well and you will continue to find answers!! Take care & hugs!!