Rachel Cox

Hi Khaarina, like you, my heart stopped on the tilt table and my cardiologist gave me a pacemaker. It's a rate drop pacemaker and paces me up to 150 beats a minute if my HR drops like a stone. It has made all the difference in the world. I haven't passed out since it was implanted four years ago. Not saying it is your next step but for me it has been extraordinarily useful. In fact, of all my symptoms, my heart is something I no longer worry about at all. When I feel my pacemaker go off, I feel quite comforted! 'Oh, good'. Also for me the BB were no good. But mestinon combined with midodrine is a winning combo for my body. I've been on both for nearly two weeks and haven't felt this generally good in a looooong time! My head is clearer and I have more energy. I am doing things I haven't done in ages, like hanging out washing!
All the best with the next thing, whatever it turns out to be. Keep us posted!

Oh, tpapik, i am so sorry to hear about your baby. Stay strong in yourself girl, you are amazing. Sorry, I dont know any anwers to your others questions, just wanted to say I hear you and I am sorry to know it. My heart goes out to you.

I was thrilled to read about INFJs when I did the test. It explained a lot! I have always been social but need time out and lots of solitude to 'recover'... people call me an extrovert, but I do fit the introvert concept described by the Myers-Briggs definition. thanks for doing the poll puppy love! Incidentally, I am also tall, fair (was) a dancer and high achiever at school, oh, and female. This does not bode well for my genetically similar daughter!!!

For me it has been a varied story of urinary retention and urinary incontinence. I recently had surgery to try to help and it has made things worse, but this might be temporary. I see my urologist next week so I will know more about what I can expect next. I kinda hope he will recommend a bladder pacemaker because I have heard good things about the effectiveness of them. It is a dreadfully frustrating symptom of dysautonomia, these urinary issues. My utmost empathy goes out to you.
I thought the universe was playing the cruellest joke when I finally got my son toilet trained and had to swap buying his nappies for buying my incontinence garments!!! So unfair. All the best Lel. Will be thinking of you...

Thank you guys!

Do you know of any websites or articles where I can find more info on this connection? My cardiologist believes it is not connected to my POTS. My urologist had me on a bladder-friendly diet for several months, which didn't help. So I go back to Cleveland Clinic this Thursday for a urodynamics test. I actually tend to suspect that my problem is the thirst (polydipsia), and the peeing is the result.

Oh I feel for you, the urodynamics test is an experience! My personal favourite part of that one was having a nurse kneeling in front of me, calling out "LEAK!" to the urologist whenever the dam burst! they do gather really really good info though. I hope it helps them to help you. :-)

That is so cool. Hope you get more of those good days!

Hiya. My heart is similar at night. I have a pacemaker so they can see when my heart rate drops. I often have rate drop episodes during the night and my pacemaker will go off. It wakes me up, but I find it weirdly comforting. I can't say I feel less fatigued for having the pacemaker pace me up but it is reassuring. Hope you find some answers music lover! It's rotten feeling so tired first thing in the morning, every morning.

My husband went to ER with similar pain and was told he had pleurisy. His next visit he was told he had pneumonia and then a clever nurse noticed something that led to them doing an echocardiogram. It turned out my hubby had a deformed aortic valve, his heart was enlarged and he needed open heart surgery to replace the valve. Sometimes heart issues are hard to 'see' without an ultrasound. Have you had the full range of cardiac tests? I'm not saying this is you, just that we always thought my hubby had asthma then pleurisy, then pneumonia and it turned out that none of these were the case. Hope you feel better soon.

Dear Giraffe

from a not brainy one.

I was evaluated for stiff-persons because of rigidity, sensorimotor neuorpathy

and spine deformities.

I didn't have a GAD antibody, though. Nearly everyone who has stiff persons does.

They are also usually diabetic and have thyroid issues and a hypreactive startle reflex.

Thanks Alice. I am certain I don't have Stiff Persons... sounds like a 'nice' diagnosis because there is a treatment for it! How are you going now with your search for answers?

Not sure why they would be testing for that. I think it relates to the breakdown of glutamate into GABA or vice versa. How it effects OI Im not really sure.

Hi Rama... Thanks for your input! I have been reading with some interest an article recently posted by Michelle about pregalbin. I have been on gabapentin since my op with moderate improvements in my peripheral neuropathy. And I read that pregalbin and gabapentin are essentially synthetic GABA. Having never heard of GABA until I got these results, started googling and sifting through your responses... I wonder if there is an important connection here. Or am I desperately connecting dots where there are none?

http://onlinelibrary.wiley.com/doi/10.1111/cen3.12006/abstract;jsessionid=8D4D188898649E17ABF83811AC35D46D.d02t01

I have recent onset adult diabetes and had GAD65 checked to help test for a more rare type of Diabetes called LADA ( or Latent Autoimmune Diabetes of Adulthood ) It is an autoimmune marker, I do not recall if more common in certain autoimmune thyroid conditions or stiff person syndrome. Having an elevated GAD65 would not in itself me you have diabetes, a high fasting sugar and follow up OGTT ( Oral Glucose Tolerance Test ) would be used for this. If you were diabetic, it would strongly point to the cause.

Hey Potluck, I don't have any thyroid issues, or any of the strong indicators of Stiff Persons Syndrome (I would describe me as floppy rather than stiff!). I am waiting to hear back from the immunologist, but as ever I feel like I need to understand the testing so I can understand his response. BTW, it is definitely domperidone... it's just my little nerdy quirk that gets a kick out of calling it dom perignon. Reckon we all would benefit from a prescription for bubbles! Stat!

http://www.mayomedicallaboratories.com/test-catalog/Overview/81596

I've seen where it is tested to check for diabetics, to specifically see if it is Type I or Type 2,, because Type I is the autoimmune type.

I ran across Mayo's lab's explanation of the GAD65 test. Basically, I'm assuming that "thyrogastric" refers to the test's listing of things that can elevate it, specifically autoimmune thyroid and/or pernicious anemia(B-12, due to atrophic gastritis in stomach).

Even though the thyroid and B-12 problem might be your case, definitely make sure they address possible Stiffperson Syndrome if you think it might apply. We had a person on this board that was diagnosed with it, had the treatment, and felt wonderful! So, don't let them leave that stone unturned.

Sue, thank you so much, I hadn't seen this information and is just what I needed. :-D you are brilliant!

This is something I'm researching at the moment myself. It has to do with too high glutamate in the body and autoimmune dysfunction. There is a relatively new illness that only a few hundred are known to have that are antibodies to GAD or glutamate problems. It causes issues with the conversions in GABA and glutamate. With this disorder there are autoimmune issues and they treat it with IVIG. (I personally, am using LDN.)

Hi Issie, do you know the name of the relatively new illness they treat with IVIG? I'd like to look into that. :-)

thanks Sue for the link, most useful indeed. For some time I have been leaning toward Lambert Eaton Myasthenia Gravis (ex smoker). I need to discuss this with my doc and see what he thinks, but I fit the profile pretty well with all my symptoms.

Issie you are inspirational!

I heart your brains.
I am going to read what they sent my way in the morning but just wanted to say thank you for responding!
Rach

Hello. I used to be brainy. I am now not. So I am in desperate need of some brainy others (Ramakantesh! Issie! Corina! Ophelialit! TAchyphlegming! Lumpchp! and any others who I haven't found on here yet!) who can apply some brain cells to my latest blood results.

see, I was expecting the usual ...nothing. But I got back from Mayo an elevated level of GAD65. And I have googled, as you do. I have found diabetes literature, autism articles, things about schizophrenia and dementia, something about 'stiff person syndrome' (the irony of my surname COX is not lost on me here... bahaha!) and the interpretive comment from Mayo: "this profile is consistent with organ-specific neurologic autoimmunity and predisposition to thyrogastric disorders" among other things.

Have any of you come across this before? Does anyone know of any POSITIVE therapeutic directions? I am frustrated and foggy and feeling a bit sad. I would really value your input. :-(

Thanks Alex. Sue... are you sure you aren't having pseudo-obstruction? This can be part of dysautonomia. My gastro guy thinks that he can fix this next time it comes up and won't go away. I often bloat, but time, mestinon and fennel seed tea help. It's just that sometimes nothing helps (I guess that is when the nerves just aren't getting their messages through) and I have to go in to hospital. Sip and suck is what he called his methods (sounds nasty).

I don't know how to control the fluids either! For me, it's either just as you describe, or I am suffering from retention. No rhyme nor reason to when I will have a bout of retention, it's just like the lights go off and noone is home... no pee for me. However, just recently I had gynae surgery and while they were there they put in a TVT sling for my bladder. Unfortunately, I am now unable to have a standard drink without needing to go to the toilet within minutes. I have failed to make it on numerous occasions :-( So my drinking has reduced and I too would LOVE to know how to 'keep the fluids in'!!!

Could be worse, it could be an infant sized brain. :-)

Thanks Rama! Found it!

does this mean that all the POTS patients in the study had gastro pacemakers? How do they measure the electrics using pacemaker technology if they don't? I am fascinated by the gastro pacemaker after gastroenterologist mentioned it the other day. Does anyone on here have one?

Apparently it is not the flow issues that are addressed which make the difference... but the inadvertent stimulation of the vagus nerve. I am intensely curious!

Do let me know how your craniosacral therapy goes, Bananas. Sounds interesting.

helloooooo! I am from New Zealand (there are even fewer of us here). I'd love to be in touch with Australian peeps. Does anyone know the exact name of the facebook group? I can't find it.

Cheers,

Rach

Hello, I have read lots of the stuff on the forum about CCVSI but I am unclear about whether anyone of you has had it done. When I looked at Dr.Arata's February presentation he seemed to focus on the improvements in autonomic function. I am desperate for improvements in autonomic function. Is my desperation clouding my reason, or is that just my brain fog?

I was diagnosed with PTSD before my original POTS diagnosis. Thing is, that many of the symptoms of PTSD could also be symptoms of POTS. I did have terrible recurring nightmares... overall though, since finding various treatments and understanding what my body is doing more, the PTSD theory seems to hold less water, for me. I do believe that our bodies and minds are inextricably linked in terms of our wellbeing. But it was interesting to me that when I had a medical diagnosis and stopped seeing a psychiatrist, the worst nightmares went away. Perhaps, when the PTSD dx was given, I had an explanation for the fear I felt, when in fact the fear was because I knew my body was not working properly? It's murky.