HopeSprings

How cool that you and Dizzyde got to meet in person! Interesting about the blood volume. It's commonly assumed that we have low blood volume, but mine was normal too when tested. I'm really interested in your response to the new abdominal binder. I have intense pressure in the abdominal and pelvic area when I get up in the morning which I assume is from pooling. It literally feels like everything is dropping - then comes the tachycardia. Please let us know if it helps.

I don't know why. Mine does this too - I think it may be part of neuropathy or maybe it (parasthesia) is just a common symptom in nervous system illnesses. Have you seen a neurologist?

So glad you're having a positive experience there. The Doctors you've been dealing with sound amazing! Faith restored.

Thanks - this enabled me to find what I was looking for. The years of posts by all these different people has created a valuable research tool! I do wish we could go back to the very first post ever and just read whatever we like though. Oh well.. thanks again, Rachel!

You can throw the Valsalva test in too. According to my POTS neuro, my valsalva results indicate autonomic neuropathy. I had "sudomotor" testing done, which I think was the QSART? and those results were normal, but a skin biopsy showed significant denervation and I was diagnosed with SFN based on that. A repeat skin biopsy did not show SFN, yet the first results were double checked and deemed accurate. I don't care what the tests said, I know based on the horrible burning in my feet that I have at least sensory neuropathy. I've also heard the other way around - of people having normal skin biopsies and abnormal QSARTS. I don't think testing can always give definitive results on this one. If you have the symptoms, I don't think a negative test result necessarily rules it out. I think the whole point of determining whether there is nerve involvement is because it can be another clue into what's causing the dysautonomia. Once I had the positive skin biopsy, my Doctor started thinking about things that could cause small fiber neuropathy (which might be causing the POTS symptoms) and tested me for a bunch of things he would not have otherwise. Unfortunately, we still haven't found the underlying cause for the SFN.

Excellent - thank you!

I don't know what I'm doing wrong. I tried that and it doesn't work. For example, I chose 1/1/07 - 1/19/13 for the time period and searched by author name (mine) and it only brought me back to 2012. I also can't figure out a way to get to the beginning of DINET - the first post ever and so on.

I did it once before and now forget how. It seems to only go back to 2008. How do you bring up the very first post in DINET'S history and see all that follow from there? Also, if you want to search a topic or a member's content, how do you enable the search to go earlier than 2008?

Thanks.

I was induced early with my second child because the POTS symptoms became so unbearable at the end - I just couldn't take it anymore. Anyway, it wasn't fun because they did a procedure which involved inserting a balloon into my cervix to open it up (sorry if too much information!) and it hurt! Had to deal with that all night and then got the Pitocin the next day. I was really fine from there. Had the epidural (which I was really worried about beforehand) and ended up being totally fine. And thankfully after giving birth to her, the worsening of the POTS symptoms went back to my normal POTS. Good luck with everything and congratulations in advance!

Thank you for the information, Rachel. I think getting an initial screening is reasonable if one can find a willing doctor.

Yes, I just went through this with Propanolol. Same thing - increased dizziness and fatigue. In fairness though I am super/hyper sensitive to medication side effects and fearful about medication on top of that, so I don't know if you can go by my experience. I'll let others answer the other questions since I only took it for 2 days - I don't know if things would have improved in time.

I am so happy for you! Yey! You've given me some hope too.

Sounds like he's making up his own rules. I've never heard of this "soft diagnosis" for POTS. One of the main diagnostic criteria for POTS is a 30 bpm increase or more on tilt test or standing within the first 10 minutes. This definition seems pretty well agreed upon by the experts at the moment. At 30 minutes you had a 50 point increase. Do you know where your heartrate was from minutes 1-10? My heartrate only went up to 108 on my TTT - still met the 30 point increase criteria, but nothing dramatic. The Dr. at the time called it "mild orthostatic intolerance" which was annoying because what I go through is NOT mild. He later called it POTS. The tilt test did not capture what I go through on a daily basis. I knew through home testing that things were much worse and a 24 hour holter monitor proved it. Have you home tested with a heartrate monitor? Maybe you should do a Holter Monitor? I think it's going to be hard for you to find someone to look for the underlying cause without firming up the diagnosis first. Maybe see someone else?

I use a CVS brand automatic arm one. I tried a more expensive one/brand name, but it gave me error messages. The one I have matched the results of the one the hospital used when I went in for IV saline - so I trust it.

This is so bizarre. They seem to be the tops for dysautonomia research, but I've heard this before about the patient experience. Ugh, it's disheartening - if you can't get help at Vandy, where can you get help - right? Maybe it depends on who you get to see there? I'm sorry you had this experience today - I know how upsetting an appointment like this can be.

Thanks Bananas! - lots of good info on that site. One thing it said is most patients with Mito have elevated blood lactate. My POTS neuro did test my lactic acid and it was normal. What stood out to me was one Dr. on that site wrote if the patient has mito symptoms plus dysautonomia and other abnormalities like ... (he lists several), but the ones that applied to me were neuropathy and high frequency hearing loss, it might be good to look into Mito. I've had this hearing loss since childhood and there's no good reason for it. So frustrating trying to figure this out for myself.

Rachel - have they found any abnormalities with your blood work that would point Doctors in this direction? Would you mind sharing what things you were tested for?

It isn't absolutely necessary that I get a mito diagnosis. Even if I do, there likely wouldn't be any different treatment. But after all these years, I'd just really like to know the name of this beast, you know?! Plus, it could provide some very helpful information for my children should they have mito too.

Yes, I feel the same way. I would feel better mentally just knowing what's causing my illness. Even if they told me there was no treatment, I'd be better able to accept this. And you're right, if there is some genetic component, it would be so important to find out for our children. I contacted the Mito association and they gave me the name of a specialist in NYC. I e-mailed him (or was it a fax? I forget), but got no response. I brought up Mito to my POTS neurologist and he knew that particular Doctor and said he would talk to him. The response was I didn't fit the profile and he said something about short stature. You have to be short to have Mito? I don't know what he was talking about. Anyway, since I don't know much about Mito, I wasn't in a position to argue, even though I knew this answer didn't sound right. I just dropped it after that. Rachel - this always happens to me. I generally leave Doctor's appointments scratching my head... going... what just happened?

My opinion on what to do in your situation - I would make the appointment at the Cleveland Clinic for some distant date. Go to Mayo and see what they have to offer. If it didn't work out there, keep the appointment at Cleveland Clinic. If the Mito cocktail is helping, it has to mean something! Please let us know what you learn. I haven't ruled this one out, but don't know how to pursue it.

Thanks for the post! I'm very interested in knowing what types of things Vandy is looking at. It must be such a great feeling to be surrounded by people who get it. Any chance they'll clue you into your personal results? Please post with updates if you're able.

Sorry you felt yucky, but glad you made it! And you may have broken a record! I don't think anxiety would explain it if your heartrate went up and down with the tilt. I would think anxiety would have shown itself beforehand just anticipating the tilt. As far as I know Hyperpots is diagnosed with norepinephrine levels and/or BP that shoots up standing or tilted up- doesn't sound like you have that information. Did the Doctor diagnose anything or do you need to follow up?

Rachel - what did you Doctor say about Mito? How did you end up going down this path? I tried to pursue this and hit a big fat dead end. Please let us know what you learn and hope you get some answers!

Oh... how I know. I'm actually worse during and after my period and feel somewhat better the week before. I'm going through a rough patch right now because of stupid hormones messing everything all up. Here are the only articles I've come across relating POTS to our cycles. If anyone knows of others, please post.

http://www.ncbi.nlm.nih.gov/pubmed/22721633

http://www.ncbi.nlm.nih.gov/pubmed/20479333

Glad you're ok and wishing you a speedy recovery! Please keep us posted on how things are going.

Please have a more in depth conversation with a knowledgable Doctor before stopping an SSRI, a beta blocker, and a benzodiazepine cold turkey. Going cold turkey off a benzodiazepine alone can be dangerous. I don't know what the protocol for a pregnant woman would be, but there must be some reasonable solution. And congratulations!!!

I know for me that hr and bp can be normal yet I can have POTS symptoms and vice versa. I think in my case, a beta blocker can control my HR/BP however I still have low blood volume above my heart which makes me dizzy.

I think she's saying blood doesn't reach the brain as it should and this may cause the dizzy feeling. Correct me if I'm wrong. That's why I asked if lying down helps - more blood to the head. Lying down helps me too.

MomtoGuiliana's explanation is the only one I've come up with either. Does lying down help the feeling?