erikainorlando

Thank you all.

I was having a day yesterday. My son asked me if I was to die where he would live. Now...I don't think I will die anytime soon....but he is worried. He is 11 and I have been very ill two times no in his young life. I just cried and cried and got so mad at being sick...mad that my 72 year old mom can ride a bike with him and I can't...bla bla bla.

Then I tried to complain to a friend..you know the rest. I like waht Futurehope said...about coming to grips with it. I think it is coming to an acceptance and then finally a level of graditude for whatever good we have...but soedays are easier than others... somedays it is just plain gripping me!! But today is a new day...thanks for listening.

Erika

I hate to tell you....you are sining my song. I thought I had fibro in addition to POTS...but I don't think I do. I just hurt. and yes...like you are describng it. I wake up hurting many days....I am pretty sure I have posted this as well. When I was trying to work it was just ridiculous.....I felt like someone had hit me with a baseball bat in the morning!!

Sorry...I don't have any answers...somedays are better than others. Alas...it is mostly corresponding with activity level....like what I stried to pull off the day before. BUT sometimes after I get moving for a little while it is better....like a circulatory thing.

Good luck.

Erika

Just to add a little more to the mix. My EP told me to up my prozac to 20m mg. I woke up this orning and my hr (after 4 days on double dose) was lower. It was around 106. Normally my hr is about 120-130 in the am so this is definate improvement. However, I have to say...I have been having a lot of problems all day with diareha. I thisis much more than my usual emptying problems. Is this a side affect or is the dose to high for me?

Rama - I do recall my hr being lower for about 1 month after starting prozac. Then it shot back up again. Any ideas?

Thanks!

Erika

I know exactly what you are saying. I just usually want my boyfriend to hold me and tell me it will be ok. He does at times but it really isn't ok and doesn't go away....I think that is it...it never goes away...but I have heard success stories so I guess we just keep pushing on...

....somedays I am in acceptance and some days I am not...today was not an acceptance day...

but your post made me feel alittle less alone!

Erika

I do have some good friends. They were supportive when we didn't know what the diagnosis was...and actually most were/are pretty concerned. Then I kind of fell off the earth as I didn't talk much to anyone...too ill.

Now I try to call and sometimes when I do I am so surprised at their responses....some are great but say "wow....you just keep getting weaker and weaker". I say...no...I am just now well enough to talk and complain. I don't think I am getting weaker...do they really know how sick I have been?

Some say..."yea...at 40 it all starts to fall apart...". Fall apart...? I got Guillain Barre in 2001 at the age of 37. I got POTS at 45. They are both rare neuroologic disorders. I can barely walk around at times...I am not just making small talk.

Are they just tired of hearing me....?? I am tired of hearing me at times...!! As I write this I know that there are just very few folks who you can talk to about this stuff....I am very grateful for you all!

Please tell me if your friends/family have said some stupid things....I am sure it will make me feel better today....

Erika

I tried prozac as I was successul with this years ago with pstpardum depression. So in April we tried 10 mg and it helped everything so much for about 1 month....then....my body got used to it I guess. We are trying to double the dose now.

I do believe it messes with the neurotransmitter levels that are way off in my body. I haven't gained any weight or had any sexual side effects or anything else...

Good luck...Erika

It has been so long since I have been unmedicated...but I believe sitting it still wasn't too bad like 80 - 95. The second I stand, hr jumps up to 70 bpm. Any...and I mean any activity and it is way worse. Talking can send it up 20 bpm.

On bb's my resting hr sitting is probably around 60 - 75. I am much happier on bb's. BUT nomral activity is still so limited.

Before bb's, going up the stairs would send my hr up to almost 190. I didn't know my hr was related to orthostatic intolerance before my TTT. I reallly thought it was activity induced.

Don't know if this helps.

Erika

Glad to hear from you. I am a new voice since your "leave". I look forward to reading your posts. I am sorry to hear of your failed marraige, illness can try relationships that is for sure. But it sounds like you havfe so much to give and so much hope to share....I am glad you are back.

Erika

Thank you. Yes...I most of the time I just calk it up to POTS. But I was just grasping....I would have hated to ignore something that can be fixed!! I have a history of neurologic/post viral illness...so this does make sense (POTS)....but I just wanted to double check with all of you. It makes me wonder annd want to make sure after so many months of being ill.

It was sure frustrating in the hospital too! I have to say....I never even dreamed that someone could get somethingl like POTS. I would have an abnormal EKG and be unable to walk more than 20 ft. Then I would rest for 24 hours...get lots of fluids and be better.....so i would go home and think it was just a fluke....try to work and it would happen again... i just couldn't understand it...like many of you all I am sure...

Anyway...just wanted to check on the ventricular event/EKG stuff.

Erika

Yes...that sounds like me. Does your EKG change after being up for a while? Do you happen to know what makes us get the ventricular events?

Thanks....Erika

I think we all can relate. I am sorry you are struggling. It is very difficult with kids (difficult without them too I am sure). I walked in my daughters cheerleading party this afternoon just to pick her up and saw all the other moms helping out. I felt guilty....but I felt so sickc from the heat that I couldn't even try to explain myself. I" just had to get home. Sometimes I snap at my kids out of frustration that I can't do more for them (kind of counterintuitive) then I feel very very very guilty. I hate that my son (11) worries so much about me.

It is just a drag. Please post...I don't think it helps us living in our heads with no one to bounce things off of. Hang in there. We are all here for you.

Erika

I have been really thinking since my appt yesterday. I just am still bothered with the EKG results being slightly abnormal after activity. Then if I rest they go back to normal. Is this common in POTS?

So then I think back on my holter monitor way back in Jan. My hr was obviously very high. 188 ... I am 46 so tht is kinda high for me. BUT I had a significant number of ventricular events. I believe I had like 1100. I had a few bigiminal cycles and a few other abnomralities but I remember the nurse saying that over 500 ventricular events was significant. Perhaps I am grasping...

Is this common for POTS? I don't mean to whine....I just would love to find something that can be fixed!!!

Thanks,

Erika

Alright. I got POTS after a virus last Sept. I also had a previous autoimmune syndrome (guillain barre) for what it is worth. HR gets very high on standing...150+ on TTT. I do not have BP problems.

I pool in my feet....they turn red/purple when I stand. They are always cold. BUT...I do have significant nerve damage in my feet and lower legs from guillain barre syndrome which I am sure doesn't help.

Main complaint is weakness, chest pain, very ill after any activity. Headaches too. But it is probably the "sick" episodes I get after activty or being upright for too long that are the worst. Oh...and I feel ilike I have been run over by a bus...all the time.

Thanks and thats it for me!!

Erika

Interesting that you brought up the stress test. When I have been up and active for a while, my EKG begins to get slightly abnormal. I have been admitted to the hospital for this a few times before my POTS diagnosis (now I just stay home). BUT in the morning after resting my EKG would be normal again. Anyone else?

Also....my cardiologist from a few years back (pre-pots) said my EKG had changed since POTS. But when I saw him it was in the afternoon...I bet if it was in the am it would have been ok..!

Erika

bjt22 -

now do you find that you can do more? Do you have less of those "sick" episodes...those I think are the worst of it...(i think someone described it as an autonomic storm)? How much would you recommend starting with? I am very thin...about 105 lbs.

Thanks!!!

Thanks guys!

i am not using compression hose at this point as it is just soooooo hot here. Even my EP said just wait until at least Oct. as it is unbearable here (Orlando). I drink copious amounts of fluids....but tht is because I am always very thirsty.

Now with the midorine does this help even if you don't seem to have problems with the BP? I guess I have the same question with the clondine....

I seem to have pretty low BP but I don't pass out...and it doesn't seem to get like I have heard others here on the forum share.

My major complaints are "sick" periods (horrible) after activity...and I really mean minimal activity...not exercise or anything like that...have to lay down...a lot. Weak, shakey, chest pain, caratoid pain up the back of my head. Feel like I have been hit by a bus all the time. If I don't take toprol I can't funciton at all....

Do you guys have BP problems or just the hr....?

Thanks

Erika

Hi.

As i already posted I saw myt EP today. He is great and listens. We are struggling to think of other things that may help me. He is worried about me in the August heat in Florida. He is open to any suggestions medication wise I make. This is where we are...

Take toprol which make my hr lower and that definately make me more comfortable.

Take pyridisome which is really not making any difference so he said to stop taking it.

Taking prozac 10 mg. When I first started taking this my hr went down considerably and I was much better.....but that only lasted for about 3 weeks....then I started back to my normal POTSY self.

My EP says to try to double the prozac for now and see what happens..

Tried forinef....bad bad headaches...couldn't tolerate it.

Tried midorine....no real difference.

Tried cymbaltaa....bad hr reaction...way too high.

I don't think BP is much of an issue for me....during my TTT my hr went from 80 to 150 but my BP didn't seem to have any real problems. So maybe that is why the midorine and pyridisome don't seem to make much difference.

What am I missing if anything...???

Thanks guys....I know there is a wealth of knowledge here.

Erika

Hi.

i was at my EP appt this morning and told him how much my chest hurts at times. Pain...but sometimes just tight and sometimes up my throat. Always... related to how long i have been upright. It hurts so bad sometimes. My EP thinks it is related to my hr but even when my hr is controlled on toprol I still get the pain. It makes me lay down!! If I lay flat for a couple of hours it can go away.....or lessen considerable. Does anyone else get this...I know I have read some who do....any ideas why?

Thanks!!!

Erika

Hi Rama,

I was tested for MG as well. It was ruled out. But if you have not been checked for it, and have a drooping eyelid I would certainly get ti checked.

Let us know

Erika

I used to get everything everyone else had but since POTS I think my immune system is super strong like Ramakentesh. Is it that autoimmune system being overactive I wonder?

Also, I was very tired last night (it was my sons birthday). So I slept a long time and pretty much feel my normal POTS stuff today............

Erika

Honestly...I am with Thankful...i would try almost anything to get my life back at this point!! I don't worry about trying different meds...if I get a side effect I stop taking it.

My life turned around 10 fold after starting beta blockers!! I could do nothing before them...now I can do a little more than nothing..right? I tried florinef and got bad headaches...so I stopped. I tried midorine and noticed no real difference so I stopped that too.

I just think that whatever can help us is the answer...whatever it is....really. This is just such a monotomous, long suffering illness...if there is anything that helps alliviate the suffering we should do it. A doctor once told me about medication "that is why they made it...to help you..".

Erika

I just started taking this. I haven't noticed any difference yet. I have heard that it can take up to 2 - 4 weeks to notice any benefit. I'll keep you posted.

Erika

I thought this was funny...my boyfriend says he has a head cold...asked me if my head hurt. I said it always hurts!!! I also always have a bit of a runny nose...specially when I am very POTSY. But I do have a very sore throat (sometimes I just feel liked I am being choked tho from POTS) and my ear hurts. My body hurts but really my body always hurts. More when I do anything...but I guess more will be revealed.

BUT I have not had any illness other than POTS since its onset. I wonder if this is because my immune system is a little overactive...not sure...

Erika

You all are so great!

I appreciate your comments so much. It gives me perspective and allows me not to kill them all from time to time! I know they are doing their best and it is a challenge on all of us. AND truley...they can only try to understand...my boyfriend said well, what is it you need my help with? I said I probably just need to complain for 15 minutes a day...then i can move on!

Alicia - you made me laugh so hard when you said your husband/boyfriend couldn't remember the name of your illness!! I would have walked up and hit him in the head with a pot and said rememer now? (just kidding!!)

EM - you are right 15 year olds have their own language ... your post made me cry.

Anyway...thank you all..

Erika

Yes....I think you should have no problem getting disabiltiy now...which is a mixed blessing eh? I got disabilty in June and i thought I would be so happy.....but it really made me down. I think this is what you are experiencing too. It made me happy that I didn't have to fight for recognition of my illlness but made me so sad that I am disabled.

I love my job. I was working so hard to get a promotion. I was in line for it and evenmy boss said it was a darn shame that my body just wouldn't cooperate. The nurse (who coordinates short term leave etc), said she had never seen anyone fight so hard to keep their job...she felt so bad for me when I had to finally surrender.

Good luck..

Erika