Kris4444

This has been happening more and more. This morning it happened while I was driving to work. I felt drunk. It was terrifying. It happened again after lunch. My last couple of fasting blood draws have had my glucose slightly elevated (114). I have hyper pots and a slew of other issues. I usually have high blood pressure but have been known to pass out if I stand up quickly. My primary doctor put in a prescription for a blood glucose monitor. He wants me to test my blood sugar when this happens to see if that is the problem. It can also be a blood pressure problem. I do have severe GI issues too... Any thoughts? Do any of you suffer from this? Thanks, Kris

Miqual I have been saying EBV is the cause of ALL of my problems as this is how everything started. They FINALLY started me on antivirals last month after having ridiculosly high EBV levels since 2008! Please let me know what they find out about this N type antibody. Do you have severe flushing? Vertigo when you stop exercising? High NE??

Thanks for the replies everyone. I am not used to my hr being that high. I have hyper pots and my bp runs high, it's been 158/108 lately (I didn't realize that I had not put my clonidine in my weekly medicine case and had missed both doses for a week before I figured it out) so the 140/100 didn't freak me out although I was a bit concerned that it was that high while trying to sleep for hours. I honestly think it's a combo of coming off the SNRI and just a lot of anxiety, too much has gone on this week and I'm not handling it well. Alex - I had posted something a while ago (sorry I can't remember what I called it but if you go to my profile it should be there) about this weird vibrating feeling I get when I am sleeping. It will wake me out of sleep. The first time it happened I thought we were having an earthquake. The next time I thought my dog was on the bed scratching. Finally I realized it was ME vibrating internally. Oddly, when I submitted my post asking if others had expirienced this phenomenon SO many people said YES! Most were afraid to bring it up because they thought they were imagining it. Some have it while awake but it seemed that most noticed it while sleeping or falling asleep. I am still having this problem. I have learned to acknowledge it but not freak out about it and go back to sleep. I'm not sure what it is, I do think it has to do with the high NE levels.

I have high NE levels. I am weaning off an SNRI because I think it's making my flushing and vertigo worse when I exercise. Last night I had that vibrating feeling we talked about a lot while trying to sleep. This time my heart felt like it was racing too and out wasnt slowing down. Finally around 3:00 am I took my bp. It was 142\100 with a heart rateof 96. I had been trying to sleep without success. Is this tachacardia?

Ya know I mentioned it to her and she asked me how I knew about that. She told me she could run it but that it would be low just like everything else. I will ask for it when I see her on the 23rd.

Here are my totals: IgM 151 IgA 212 IgG 790 IgE 1.5 IgG Subclass 1 358 IgG Subclass 2 322 IgG Subclass 3 50 IgG Subclass 4 7.4 Immunoglobulin G Serum 762 Yes I know that IVIG is done through IV and that what she wants to do is subquetaneously. She said that she doesn't like to put her immunodeficient patients in a hospital type setting where we can possibly run the risk of getting sick so she prefers to use Hizentra which is the sub q version. She had me watch a video about it. My total IgGs went up so it doesn't look like I will eligible which is good on one hand but not good on the other. She said that I will feel SOOOO much better on Hizentra. At the same time, I don't like the idea of putting other people's blood product into my body. If my body can heal itself with the help of anti-virals and we can get things under control that would be great!

Thanks arizona girl. Yes it was my total that was low to begin with. Now that has gone up but the subclasses all went down with the IgG 1 going below normal. The rest went down but are in the low normal range. She is hoping to do the sub Q version of IVIG but my total IgG's have to drop into the 600's in order for insurance to cover it I guess. They went up to 790 with the vaccine so who knows what will happen now. I will have lots of questions for her when I see her on the 23rd. Thanks for all the info!

Thanks Abby!

Thanks! This is the most excited I've been in a while. Just wish I didn't have to wait on answers about the subclasses. I get so curious.

It's called Linzess. It's used for IBS-C and helps with bloating and pain too. I have colonic inertia and mild gastroparesis among other lovely GI issues.

Well that is good to know Chaos! I am pretty excited about the EBV titers coming down. I do think I have a bit more energy but then again doing yard work for a short time this weekend kicked my butt so who knows. Just went for a nice walk with my hubby though and it felt great. Another positive note is they started me on a new med for my GI issues which is just amazing! We are weaning me off the SNRI and hoping the flushing and vertigo with exercise gets better. The SNRI had my colon functioning somewhat so I was really scared to stop taking it but this new medication is the best thing that has happened to me in a while gut wise and I'm thrilled!

Wow Hope! I'm happy that this was brought to your attention. I hope that the scan gives you both some answers and gets him feeling better soon! Let us know how it goes!

@Susanhs - I'm sorry that things are so bad for you. I was on Amitiza for years, the highest dosage twice a day as well as having to take Miralax 3x's or more a day and still nothing. I didn't have high hopes for Linzess but I'm thrilled that it is working for me. I know what you mean about having animosity against those who can eat. When I am not doing well I can have a real pity party going on. Ugh. Hang in there!

Hi, My doctor's office called today to go over my labs. I had them fax a copy to me as well so I can compare. The GOOD NEWS is that my body DID respond well to the pneumonia vaccine. The anti-viral is bringing my EBV titers down as well! What is weird is my IgG subclasses. My subclass 1 went way down (below normal) and most of the others dropped as well but not below normal like subclass 1 did. Only subclass 2 went up slightly. My IgG serum total went up some which is good but the doctor was hoping it would go down so we can do IVIG therapy as she feels this will help. All of this is Greek to me. Does this make sense to anyone? I believe all of my subclasses were normal and only my total serum IgG's were on the low side 6 weeks ago. Is this good or bad? Thanks for any insight. Kris

Hi Tuesday. I just recently bought new shoes which seems to have only made things worse. They were reccommended for my issues (I have plantar fasciitis) A very stiff sole. Maybe they aren't the right shoes for me or maybe I'm just so out of shape and overweight that my feet pronate more than they have and it's causing more problems. Thanks for the suggestion. Maybe I should go see my foot doc again.

I rarely throw up.

I have been on the SNRI for about a year now. I am weaning off of it to see if some of my symptoms are side effects of the drug. I was put on it for constipation and it has helped.

looneymom that is my diagnosis from Mayo as well. Yes, hyper pots.

Kelly - we are considering MCAS as part of my diagnosis but my immunologist refuses to test for mast cells. I have severe flushing episodes that literally knock me out sometimes. It gets really bad when I exercise or when I am cold and then warm up. The immuno says she wouldn't treat me any differently even if I had a mast cell issue, she would continue to keep me on the same meds and treat me the same. I have to wonder if IV fluids would help me. I have never heard of that being used as therapy for MCAS. I have many of the same triggers as you do. Yesterday I did some gardening, it was a beautiful day. I spent most of the day in bed today due to being exhausted. My GI tract shuts down as well, I have severe colonic inertia and now have mild gastroparesis. All of this started with an EBV infection, worst illness of my life. My immuno is considering IVIG becasue my IgG's are low. I'm waiting for blood work to come back. I wonder if I should ask her about IV saline?

The name of the SNRI is Pristiq.

Well the GI doctor says that the GP is too mild to treat. I told him the issues I'm having with the high NE levels and severe flushing and vertigo and that I want off the SNRI that he prescribed which is helping with the constipation. He wasn't happy with me and when I tried to explain that YES the mediation does help with the constipation, but the side effects have become so severe that I flush profusely and get terrible vertigo when I exercise (run, ride my horse) to the point where I have had to stop doing the things I love and have gained a tremendous amount of weight. He prescribed Linzess. I started taking it yesterday. We will see what happens. So far nothing but as with any new drug it will take time. Fingers crossed that I find a way to feel better soon. My biggest goal is to lose weight but no matter what I do I just keep getting bigger.

I have high NE levels. My symptoms are severe flushing and vertigo, especially with exercise. Heat and cold intolerance. Flushing when eating (random foods) and flushing with alcohol. I am on an SNRI which I think may be making my symptoms worse so I am weaning off of it with the help of my immunologist. Hope this helps. Good luck.

Yes. I have severe colonic inertia (terrible constipation). When I am really backed up I will have really bad pain under my rib cage on the left side. I have found help with the drug LIbrax. It helps with the spasms in the colon. Sounds weird since I don't really have much motility in my colon but I think when it's full and trying to empty and it's closing down on stool (sorry for tmi) I start to feel pain. The librax helps.

I got the official report in the mail and a letter from my doctor. He said "as you will see the gastric emptying scan shows mild delay. It can be highly variable from one study to another but this is positive whether it is mild or not." He went on to say that there may be a specialist in the area that may be of some help but would not know who to refer me to outside of Mayo clinic. I was just there in January but for ANS testing and nothing more...

Well the time before I dislocated my pelvis. So I guess EDS worked against me that time. It wasn't a hard fall today, emergency dismount when I realized I couldn't get my right leg around the saddle when he spooked as I was mounting. Unfortunately I am so overweight that my emergency dismount landed me on my left butt cheek and of course I didn't let go of the reins so he pulled me pretty hard as he was spooking away from me pushing off of him. I had some nasty sciatica right away but got back on anyway. There was no one outside with us and he was high as a kite and not wanting to be away from the herd. PIG! LOL! Anyway, he spooked at a jogger and I decided to dismount and take him inside. Got some nice work out of him in the indoor. I have a huge bruise on my inner thigh on my right leg from the cantle jamming into it as I tried to jump off. If I were fit and not overweight I wouldn't have had this problem. I used to have an Andalusian stallion in training and his trick was to bolt when you would mount. I used to be able to hop on anyway but now that I'm fat I guess I just can't. Was diagnosed with GP today. Im hoping that will help me get on some sort of diet that can help me lose these pounds! Today was embarrassing! Thank God no one was around to see it! LOL!