Where In The World Could I Possibly Fit In?

[gjensen]

I am still trying to drink out of this fire hose.

I was looking over some graphs of tilt table responses. I do not fit any of them.

When I stand, I get the heart rate spikes. An increase anywhere from 40 beats to 80/90 beats. Who knows. Depends on the day.

Also when I stand I have a blood pressure drop, but not especially large. 10/20? The drop is short lived and then my blood pressure begins to rise. And rise.

The high blood pressure with my OI made me suspect hyper pots. How many hype pots have the initial drop though? On my TTT test I went from 110/70 and 65bpm to 130/90 and 110bpm after being upright. Then I crashed to 70/45 and a hr of 160 with the nitro.

Is the POTS diagnoses based on no more than a drop of 10/20 based on standing or after the drug used in the TTT?

It is going to be a while before I see an actual sub specialist, and my cardiologist is giving me the freedom to decide what I want to start with concerning treatment. I asked and filled a prescription of clonidine based on the idea that I might be hyper pots. I get the "adrenalin surges" etc.

Can you have Hyper Pots and have the drop then the high blood pressure?

Also, is anyone else so sensitive that just riding down a semi bouncy road cause their blood pressure and heart rate to spike?

Regardless, I am trying clonidine today. Guess we will see how it goes.

[Katybug]

I can't tell you where you fit in. But I can tell you that my HR jumps up to pots levels, and then my BP yo-yos all over the place (high and very low) for the duration of the ttt. I generally run low to low normal for BP at a regular doctor's appt. I am officially dx'ed with pots. My pots neuro was not surprised to see the fluctuations in BP and stated that he would rather see that when my HR is high because it indicates to him that my body is at least trying to compensate for my inappropriate HR as opposed to full autonomic failure when it would not react at all. (That wasn't as comforting as I think he wanted it to be. Lol!)

[KareBear]

I think the initial Bp and heart rate change immediately upon changing positions is common, then the body tries to adjust for the gravity and thats the part they are looking for when looking at ANS problems.

[gjensen]

Katy I imagine that was not as comforting as intended.

MedicGirl, I wish that the TTT was done by someone, or interpreted by someone that knew what they were looking at. I don't. It doesn't fit a typical pattern, but not much about all of this is typical. For any of us. Guess you cannot rationalize irrational.

I just wanted to try something, and I started clonidine today. I will know after a bit, I guess, whether or not it is an improvement. I just do not know if I am starting in the right place. One minute I think that I am, and another I do not.

All I am asking for right now is to move about my yard. Take the boys to school etc. I think that I can settle with not being able to do everything. I just want to be able to do something.

I appreciate the replies.

[KareBear]

Regaining the physical activity you mentioned certainly isn't too much to ask and hope for! Being able to do the simple daily things would make a world of difference to us. I hope the new med works well for you, keep is posted!

[Chaos]

I haven't had nitro on any of the 6 TTTs I've been given so not familiar with what they are looking for after it's administered. I know when you have that type of crash in BP without nitro a person will likely get an NMH or NCS diagnosis along with a POTS diagnosis. Not sure if that's the case when it's triggered by nitro.

Do you suspect that you might have any kind of connective tissue disorder underlying this? Any history of freaking people out in school with what you could do with your joints? Do you form wide scars that look like papyrus paper? Asking because my POTS neuro has told me that he's learned over the years of treating his POTS patients that the ones who have hypermobility issues underlying their POTS frequently don't do well with clonidine. Just a thought in case you have that in your medical history along with the POTSie type symptoms.

I think most docs are realizing that the terminology currently used for the subgroups of POTS is probably not very helpful. There seem to be quite a few of us who have characteristics that go between the various "types". At my last visit my POTS doc just threw up his hands and said he had no idea what type of POTS I have because I have components of all types but don't fit neatly into any one category. Don't feel alone in not fitting into any one set group. I think it's not that uncommon actually.

Makes finding meds that work all the more interesting. For most of us it's a trial and error thing even when you supposedly know what type of POTS you have.

[gjensen]

Chaos, I do not suspect connective tissue disorder. Maybe one of the few things I do not suspect. LOL.

I like my dysautonomia diagnosis right now. I think that it better describes what is going on with me. If the sub group labels do not aid the start of treatment, then I could not see where they would be helpful.

MedicGirl, I tried pushing myself yesterday. I spent 20/30min? up right. Tried to rake a bit. Heck, I would probably just keep pushing it, but I swear even though my blood pressure and heart rate is high, my brain is not getting enough blood. I get dizzy, get where I cannot think, etc. Nothing new to anyone here, but . .

I am still trying to adjust to this new reality, emotionally. I am up and down right now. The lack of activity, or the ability to do is the hardest part. This is no nock on anyone with this problem, but if I did not have legs, I could adjust easier. If I knew that it was going to be like this until the end, and I was given a choice . . I would volunteer to take them off myself. I could figure it out.

[SarahA33]

Gjenson,

It seems like the more control I try to regain the faster it all spins out of control again. I have to agree, even though I've been diagnosed with hyper pots I still am unable to fit exactly in that box for treatment. Sometimes we fit into boxes a,b, & c.. not just a. Now, that would be much too easy lol

Sorry to hear it seems your going through a bit of a rough patch. Your closer than you were before and even a few steps forward with some taken back is still progress. It meant a lot to me to not feel like I wasn't going through this alone, so this website has introduced me to many new great people and 2 especially close ones that I've been able to identify with and form actual friendships with. It's easy to often isolate with family and friends and I've learned over the years how to disconnect while the physical symptoms are so prominent.. It's a balance of letting go and just being that i'm trying to adapt to. Do you have a touch of type-a too?

I hope some of this helps. I guess all I was trying to say was.. you aren't alone!

[KareBear]

gjensen, that is very hard and I struggle with the fact that mentally I can and want to do everything, but physically I cannot. It's like an internal war with myself. I'm sure you paid the price for pushing yourself yesterday. Despite Moments of normal BP and heart rate, the dysautonomia symptoms are still there for most of us so you aren't alone.

When I first became very ill in 2007, I was hospitalized, lost my job, was bedridden and everything seemed to crash down around me. I was quite emotional and depressed for a while. The first year was the hardest. Then I started to learn how to accept this new life and learn that I still had purpose here and there was a lot I could do to be productive without my physical body. I learned to accept help better from others too. It's a process and takes time but it truly does get easier so hang in there and realize that your life may be altered but thats all it is is altered and you can adjust to it. I know what your are going thru and it can be tough.

(((((HUGS)))))

[gjensen]

Sarah, type A would have been an understatement. I have wondered if I did not do this to myself. I was a before dark to after dark kind of guy. I felt like it was all getting to me before all of this hit. Really though, I knew something was happening.

MedicGirl, the hardest part for me is how it relates to my boys. I can't take them anywhere or do anything with me. My youngest asked me yesterday if what I had was curable. I asked him why, and his answer was so that we could play basketball. That was hard for me to swallow.

A lot is going to change, and my boys is where my concern is.

I took a few shots with him today. I pushed it a bit today.

[KareBear]

You sound like a wonderful dad! It made me tear up reading what your son said so I cant imagine how it affected you. I dont have the expertise on the impact of family like others do on here, I do believe that though the way you spend your time with your son is changed, you can make the time together just as special if not more so. I'm sure taking a few shots with him meant a lot to him. Do you think you can do things like playing "horse" but with dad friendly rules?.......like all shots from a laying or seated position? Maybe with a lowered goal so you dont have to use so much strength? I bet you can find some fun ways to play.

Anyway, just a thought. You are doing your best and your son sounds like he really cares, its probably harder on you than it is on him, parents naturally want to do everything with/for their children. You ARE a wonderful dad!