Back From Birmingham, With A Diagnosis!

[CharmedLinz]

Hi Everyone,

Told you all I would write after my appointment at the MVP center in Birmingham. My appointment with Dr. Watkins was wonderful, he spent nearly 3.5 hours with me, what a difference from the 20 minutes I get here with my Doctors. Can't say enough about the whole clinic in general it was an awesome experiece. It was very much worth the long drive from New Mexico.

My official diagnosis is Dysautonomia caused by Hyperadrenergic Neurocardiogenic Syncope. He doesn't feel I have actual POTS as my resting heart rate and BP are very low. Also said I have a sleep disorder, IBS, abrnormal GXT, and fibrocystic breasts and ovaries.

So we're sticking to the Florinef but skipping a BB because of the low BP and Pulse and he added Klonopin to treat the adrenaline surges and Zoloft to treat the low serotonin levels.

It's been a week and so far the Klonopin is helping but I'm having some strange reactions to the Zoloft.

Any input is appreciated. He started me on 25mg once daily and I'm supposed to go up to 50mg after 10 days. I'm wondering if I should have started at half of the 25.

It's making me very very emotional almost like severe PMS, can't stop crying and I feel very flat, just don't want to do anything at all.

Anyone else have these things happen when they first started an SSRI?? Does it just pass after awhile and then starts to help?

I do have a call into the clinic to ask about this but would like input from you all.

Thank you all for being here it's nice to know none of us are alone.

[ramakentesh]

Its great that you got a diagnosis - I know what its like when your stuck wondering why you feel so unwell yet no one seems to know what is wrong. Hopefully treatment will help you out

[HopefulLady]

That's great you got a diagnosis! I am actually on my way to the same clinic next month June 21st! Sounds like I am going to be in good hands. I am seeing the same doctor you saw. I am glad your getting the treatment you deserve! Hope your feeling better now that you have things sorted out with your illness. And thanks for the great feedback about this clinic.

[lieze]

I felt very weird on the zoloft too and what she told me in the end was to just take whatever dose my body would tolerate.

Maybe you should even try cutting back a bit to half a tab?

It hit me really hard and when I tried to increase I got a rash all over my body and felt fluish and I stopped the medication all together.

[potsgirl]

Zoloft or other SSRI's can cause many varied symptoms, and most of us with dysautonomia issues are very medication intolerant and need to start on very low doses of a med and titrate slowly up. I would ask your doctor about cutting back to half or even a quarter of your 25 mg and then slowly upping your dose. Also, not every SSRI works for everyone, and most come with a warning about possibilities of feeling very depressed and suicidal. If this is how you're feeling, it's NOT the right med for you! I couldn't tolerate Zoloft or Prozac, but Paxil works for me. The highest dose I can comfortably tolerate is 15 mg. Usually people start off at 20 mg.

I also take Klonopin, which seems to work well for me. I take it at night, and it helps me sleep. I take .75 mg of that. I also suffer from orthostatic hypotension, very low BP (have a pacer for bradycardia), and just an FYI, both Klonopin, Paxil, Zoloft, or any SSRI can lower your BP. I keep a log of my readings to bring in to my cardio, because some meds will make it go crazy, such as the use of pain killers if necessary.

Good luck, and I'm sure you'll find the right meds for you soon.

Cheers,

Jana

[the4richards]

I tried to do some research before I posted this question...but quite frankly, I just am not grasping it...

You posted that you were diagnosed with "Hyperadrenergic Neurocardiogenic Syncope". I have heard hyperadrenergic in reference to POTS, but never to NCS.

My question is, what exactly does hyperadrenergic mean? In laymans terms please since it seems many of you are so much more medically advanced and/or have been in the POTS world a lot longer than me.

Just trying to understand some of the buzz words so I can grasp our differences.

[HopefulLady]

I wanted to add a note about the zoloft... I have never taken zoloft but I did actually try lexapro and paxil. I broke out in full blown hives with them so I stopped of course. I ended up ultimately on Effexor XR which is an SNRI similar to an SSRI only the SNRI works on nor-ephinephrine as well as seritonon. Just to let you know these medications can cause some pretty bizzare side effects when first starting them. I am on an Extended release form which I seem to tolerate much better because it's time released and doesn't all go into my body at once. They also make liquid forms of these drugs too if your extremely sensitive to the drug/side effects. Just my own experience it took me about 4-5 months for the side effects to wear off. Now I don't usually get side effects UNLESS I miss a dose. It's important to always take these type of drugs at the same time everyday. They all have side effects some worse than others. For me I had really strange dreams, dizziness which I was already used to LOL, flushing, mild headaches, and parathesia(burining numbing senstastions) yawning, spaced out feeling, sleepiness. These eventually went away after a few months and I started to feel better. If you can make it through the side effects eventually your body will adjust to the medication. If you are having any side effects that are not listed as common with the drug best to talk to your doctor for adjustments. ALWAYS start on the lowest dose and go up gradually overtime. There are many options some people do better on extended release (like me) or liquid forms, because most of us are already chemical sensitive this might be something you should bring to your doctors attention. But the side effects do go away as disturbing as they can be sometimes your body does adjust. Your not alone starting new medications can be very scary and we are all here if you need any help.

Tara

[Chaos]

So glad you got your diagnosis and now have some info that makes sense of your symptoms. That's such a nice thing!

I took Zoloft for about 7 years. Never could get over the 25 mg dose and had to stay at 12.5 mg most of the time. It was one of the 2 meds of that type that I could tolerate. I never felt "great" on it, but at least I could handle the side effects. I too felt "flat" most of the time I was on it.

I've been on Wellbutrin now for 7 years and have done MUCh better on that. I was able to start that with NO side effects and started feeling almost normal very quickly. When I "crash" with this ANS stuff, I can increase my dose and it helps with the fatigue somewhat.

Being a fellow New Mexican it would be nice to compare notes on local docs etc. PM me if you would like to chat.

Sounds funny to say congrats on your diagnosis, but most of us here would appreciate how much that means! : )

[CharmedLinz]

Thank you all for the encouragement and input on meds.

Docs office got back to me today about the Zoloft symptoms and with the intensity of them after only being on it for 6 days told me to stop taking it and in a couple weeks we will try Lexapro.

I'm thinking I might do ok on just the Klonopin to control the adrenaline but we will see.

Looking4Answers:

I tried to do some research before I posted this question...but quite frankly, I just am not grasping it...

You posted that you were diagnosed with "Hyperadrenergic Neurocardiogenic Syncope". I have heard hyperadrenergic in reference to POTS, but never to NCS.

My question is, what exactly does hyperadrenergic mean? In laymans terms please since it seems many of you are so much more medically advanced and/or have been in the POTS world a lot longer than me.

Just trying to understand some of the buzz words so I can grasp our differences

From what I understand Hyperadrenergic just means that your body over compensates for things by putting out too much adrenaline resulting in anxiety and agitation. For me, starting at about 4pm everyday I feel like I'm in a bad dream where I can't run away from something fast enough. I think someone on this forum once wrote that she felt like she was being chased by a bear. Which pretty much sums up the feelings.

One question for you all..........

In the Dr. notes I got a copy of under the "Heart" category he remarked that I have Systolic clicks at the left sternal border slightly increased in the upright position compaired to flat position.

Anyone know what this means??? He didn't say anything about it during the appointment.

[barton]

I also have Neurocardiogenic Syncope and I had trouble with the SSRI's too. Tried both Lexapro and Paxil at the lowest recommended dose and felt both times like I was crawling out of my skin. Stopped after a week each time. But I know lots of folks who have had little or no trouble with SSRI's.

Klonapin is about the only drug that has helped. But I only take it sporadically as I feel (at least with me) I develop a tolerance and it becomes less effective with regular use.

Hi Everyone,

Told you all I would write after my appointment at the MVP center in Birmingham. My appointment with Dr. Watkins was wonderful, he spent nearly 3.5 hours with me, what a difference from the 20 minutes I get here with my Doctors. Can't say enough about the whole clinic in general it was an awesome experiece. It was very much worth the long drive from New Mexico.

My official diagnosis is Dysautonomia caused by Hyperadrenergic Neurocardiogenic Syncope. He doesn't feel I have actual POTS as my resting heart rate and BP are very low. Also said I have a sleep disorder, IBS, abrnormal GXT, and fibrocystic breasts and ovaries.

So we're sticking to the Florinef but skipping a BB because of the low BP and Pulse and he added Klonopin to treat the adrenaline surges and Zoloft to treat the low serotonin levels.

It's been a week and so far the Klonopin is helping but I'm having some strange reactions to the Zoloft.

Any input is appreciated. He started me on 25mg once daily and I'm supposed to go up to 50mg after 10 days. I'm wondering if I should have started at half of the 25.

It's making me very very emotional almost like severe PMS, can't stop crying and I feel very flat, just don't want to do anything at all.

Anyone else have these things happen when they first started an SSRI?? Does it just pass after awhile and then starts to help?

I do have a call into the clinic to ask about this but would like input from you all.

Thank you all for being here it's nice to know none of us are alone.

[scarfgirl]

Hi Charmed,

I also go to the Birmingham Clinic. Dr. Watkins REALLY likes to prescribe Klonopin, but like you it only makes things worse for me. I seemed more emotional, and I was always dopey. He said I was hyperadrenic as well, but I have doubts about that. I think I'll ask if he has an alternative treatment to Klonopin.