abbriggs

Do they have POTS? I am wondering how it will affect all of my symptoms.

I was just had a positive sleep study for sleep apnea. I had 33 apnea episodes and was classified as moderate sleep apnea. Does anyone else have it? Did wearing a cpap help with the day time fatigue?

I have Inappropriate sinus Tachicardia, SVT (Which I had ablation for) PAC's, & PVC's

I am lucky enough to have an EP in Austin that was one of Dr. Levine's interns so I at least have a dr. that knows about POTS. They never did an MRI. All my echo's have come back normal as well. I have lots of other neurological symptoms. So for me I really believe that there is an underlying cause. I know I will find it one day. Just have to stay hopeful. I am thinking about long term antiobitics. If I feel better after a few weeks of use I am wondering how I would feel after a few months of use?

For me I was fine one day then I got pregnant with my 2nd child and all **** broke loose. My pots literally started with in days of conception. For me I truly believe that I have some sort of virus or something underlying in my body that when my immune system lowered its self so it could sustain the pregnancy the 'bugs' were able to take ahold. After I have been on antibiotics for a few weeks I always feel so much better for the next month.

I was on bed rest at the end of my pregnancy for about 4 weeks. This is what they thought led to decoditioning for me. I don't agree since my pots started at the beginning of my pregnancy not the end.

He is my dr. While the program helped me for a while and it did help me to be able to function with out the use of medications. I had a huge crash and had to go back to meds. He really believes that all POTS is due to deconditioning, period. When he realizes that his program will not help you he pretty much tells sorry there is nothing I can do for you. You just have to get used to it. I was really disappointed with the way he went about it.

I forgot to take mine 1 day and my HR did not go below 150 the whole day. I was miserable. My Dr. said it was a rebound affect, that you should always taper off slowly by about 12.5 mg a week. So if you take 100 mg it would take 2 months to get off of it.

like I said earlier. This day I did not notice them. If I am around my period they feel horrible. I believe that they originate in the sinus node. I wonder if they just go hand and hand with POTS since it originates in the sinus node as well. My EP said let me know if they get worse. I am trying to come of my BB right now so he warned me that they probably would.

I am in Austin. I have often thought the same thing. My support system is here too and my kids are young so I don't want to take them away from their grandparents either. The heat kills me. Does taking hot baths or showers affect you as well?

So I wore a halter last month for 24 hours. Not sure why they wanted me to do this but oh well. Anyways they caught 2200 PAC's in 24 hours. I actually felt pretty good the day that I wore it. I would hate to see what one of my bad days was. Does 2200 seem kinda high to anyone else?

My Dr. Ben Levine in Dallas is a Cardiologist that Specializes in POTS. I really think he could help you. I personally know one woman who's heart was only functioning at 20% who got her back to functioning a normal life.

ramakentesh: Is this the reason why Dr. Grubb places some people on SNRI's to help even it all out?

It really helps me with PVC's and PAC's. I have been taking it for about a year now and love it.

The exact same thing kept happening to me. It turned out to be SVT. I had ablation for the SVT. Not POTS and it is much better.

Has anyone else had a spinal tap and had low fluid pressure. Everywhere I look online low pressure means a blockage like Chairi. Just wondering if this is a POTS thing. The low pressure that is. My BP is high when I am standing and low when I am laying so I am wondering if the same is to be said for spinal fluid pressure. One of my worse symptoms is pressure in my head and back of the neck that radiates around to my ear and jaws. My hearing get bad and I am constantly trying to pop my ears to hear better.

Does anyone else have low spinal fluid pressure?

Thanks,

Mandi

I have also read that a CINE MRI is a good test to have done.

Has anyone been to the Dysautonomia Clinic at Vanderbilt? I would love to know your experiences.

Thanks,

Mandi

Well, I have this to say. Since I have been taking the shots I can not wear my wedding rings. I do retain water easily though. My hands look like they did when I was pregnant. I have not changed my diet at all. I drink only water and tea. So for me I am retaining so much more water now.

BellaMia: I read the Livestrong article too. I think that the article is written for someone with out any problems. The majority of my problems are Neurological. It is helping me with my Neuropathy. The change is dramatic. I don't think I will take it everyday for the rest of my life but for the next 3 months I will. Like I said in another post, I just received 2 CDC positive Lyme tests. So, I am working with an LLMD and just started taking antibiotics too. But for me the change in my neuropathy is astounding.

Did you read the link that I posted?

lmt033167: I am not sure what you are asking? It is a prescription that I got from my Dr. you would have to get a prescription and have it filled at a compounding pharmacy. Your dr. might be willing to give you the shots once a week or so at their office.

The sodium is in with the B-12, part of the ingredients.

My dr. did right me a Rx for them. I had never heard of it before. Methylcobalamin is what I take. Read the like that I provided.

I live in Texas. I get my compounded at Peoples pharmacy in Austin. Not sure if they ship. I would think any pharmacy that compounds could have it made. I am very happy with the results. Hoping to get the energy that is supposed to come with it too.

I posted about this in another topic but I really wanted more people to read it. I started giving myself daily IM injections of Methylcobalamin a form of B-12 and the majority of my Neuropathy is GONE.

http://www.prohealth.com/library/showarticle.cfm?libid=481

Great Article about it benefits.

I take Methylcobalamin 25 Mg, 1 ml a day. Mine in IM (intermuscular). I give it to myself in my thigh muscle. My Dr. did prescribe it for me. I finally had my dr. reluctantly do a Lyme test and it came back positive. So I am hoping that I am on to something.

It has REALLY helped with my neuropathy in just the few days I have been taking it. I am hoping for the energy factor that comes later.

http://www.prohealth.com/library/showarticle.cfm?libid=481

Just started giving myself B-12 shots daily. They also have Sodium Chloride in them. I have the type of POTS that makes my blood pressure rises instead of falls. I also retain water very easily. So about an hour after my shot I felt my fingers swell and could no take my rings off.

Just wondering if any of you that salt your diet have thought about doing it in another form. I think this would work for you.

Mandi

Has anyone heard of giving them to yourself once a day?