wareagle

I found out today that the autonomic specialist I see is on medical leave and no longer seeing patients. I feel so lost and terrified right now. I've been so fortunate to have a doctor that knows all about dysautonomia since I was dx 6 yrs ago...and now I have no one. This summer I was going to try new treatments...and adjust my current meds...now I'm just trying to find a doctor that feels comfortable enough to continue me on my current meds. I have an appointment with an Internal Med doc for next week. I had to call more than 5 doctors just to find someone that was still taking new patients. I'm pretty sure I'll get referred out to someone else...I just don't know who...a neuro or cardio? I just don't have the strength to break in a new doc...and don't know how I'm going to deal with this. To top it off...I finally made an appointment to get my Chicken Pox vaccine and now I'm wondering if I should go through with it?

Thanks for the post. I'm considering trying Ritalin soon...maybe it will help!

Jan- I've had the blood test to confirm I don't have the anitbodies. It's really strange too b/c I've been exposed several times in my life but have never contracted Chicken Pox or developled an immunity. It's always been a scary possibility hanging over my head. I just hate the idea of getting the vaccine too...but I guess it's the lesser of two evils!

Hi Pat- Ram or Erik will have a better answer for you but here's the difference b/w sympathetic and parasympathetic in a nutshell. Sympathetic NS prepares the body for Fight or flight. It's primary primative function is to help us survive life / death situations by getting us ready to fight or run away. So it increases heartrate ect. Parasympathetic does the opposite of the Sympathetic. It returns your body to it's "normal" state once the threat is gone. So it's responsible for getting your heartrate back down and relaxing you other functions after a fight or flight situation. For us out Sympathetic nervous systems are often overstimulated all of the time leading to tachycardia ect....and b/c of this our parasympathetic NS can respond inappropriately to try and bring balance back and can lead to episodes of bradycardia. Of course with POTS the tachycardia isn't just a result of the sympathetic over stimulation it's often a compensatory response the the decreased blood flow to the brain. I just use it here as an example of the syptoms caused by over stimulated sympathetic response.

Julie, Thanks so much for the info regarding your son! I'm in my 30's and I've NEVER had Chicken pox or the vaccine. My doctor is really concerened about this and I'm terrified of getting chicken pox. I'd like to get the vaccine but I didn't know if I could b/c I take florinef as well. I only take 1/4 tab at a time but I've been taking it for years now. My doc didn't think this should be a problem with getting the vaccine but I've still been extrememly leary about it. Maybe I should be brave and finally get it done this summer. I know for adults I'll have to get two rounds of the vaccine. I just hope I don't develope shingles! Look forward to hearing others chime in with their experiences.

I have. My doc said it just means that I have an obvious / textbook case of POTS.

Yes! The Nasonex helps me alot with stuffiness and the other nasal issues. I had a horrible allergy / hayfever attack last month and finally remembered I had the Nasonex. Within 24 hours I was able to breathe again. I think there are other rx nasal sprays but I've only every used the Nasonex. Hope it can help you too!

Thanks Julie! Maybe I'll try to add just an H2 first and see how that goes.

I have a question about the H1's. I'm already on Atarax...I take it at night. This is a H1...so, is it typical to take an additional H1 during the day like Allegra or Zyrtec? Or do you just take one H1 med and one H2 med daily? My seasonal allergies have really been effecting me the last few years....they make my POTS symptoms so much worse. I want to talk to my autonomic doc about antihisatmines. I also take Nasonex which has helped my nasal symptoms...but I still have the horrible fatigue and other allergy symptoms.

Congratulations! What an awesome blessing for you and your family! Thanks so much for sharing your story.

Just a quick question about the gallbaldder side-effects. If you no longer have your gallbladder is this med safe....or does it potentially cause additional problems? I'm thinking spinchter of Odi issues? I've been wondering about this drug for awhile. It's on DINETS main page as a possible treatment option. I always thought it was only benificial with blood pooling following a meal. Guess this isn't the case? I'm so excited for you Persephone!!

Thanks for the help ladies! I'm going to ask my doc if we should do another round of Gluten testing. I was just trying to figure out if the Gliadin IgA results from 7 years ago could have meant something other than a gluten sensativity. I think I've had the tTg before and it was negative. I'll just get it checked again too. You're right this is all very confusing!

Hello friends. I'm going through all of my initial workups from 7 years ago...trying to find out if we've missed anything. Here's some background: I've ALWAYS had energy problems. Since I was a child I've needed more sleep than other people and I've never had a ton of energy. Then around the time I developed POTS I also discovered a B12 deficiency and started getting a re-occuring hive on my wrist. I'm pretty sure it was a case of EBV that set off the autonomic problems but I'm trying to figure out what was going on BEFORE the POTs. I had bad allergies when I was younger too. I recently started thinking I should look into the allergy issue further and possibly do a sleep study. So, I'm going through my labs from Mayo in 2003 and came across this result: Gliadin IgA 32 (High) Gliadin IgG Normal No one every said anything about this. I tried looking it up online and just keep getting directed to Gluten problems. But I didn't think this was the test for Celiac. I think my doc did test me for Celiac at one point and it was negative. Any input would be appriciated. OH...also strange....on my radiology reports it notes that I have lumberization of S1 and Azygos fissure! Guess I just wasn't put together right!!

I'm a Speech Pathologist...was working in hospitals when I got sick. Pretty sure it was exposure to the epstien-barr virus. Although I've had lack of energy issues since I was a child.

Is there specific testing your Neuro wants you to have done that you HAVENT already had? It seems to me that if you're symptoms have improved your doc. wouldn't want you to come off any of your meds. I'd understand a bit more if the doc. wanted to test you while ON your current medications to see what if any adjustments need to be made to your treatment plan. Perhaps you could speak to your doctor and get clarification on why you would need to stop your meds...and what specific information they are looking for with this testing. It also depends on the meds you take. The midodrine is okay to stop suddenly...you could just take it after the test. I definatley would be hesitant to stop anything that has to build back up in your system to be effective. It's so hard to find balance with POTS treatment...I wouldn't want to "rock the boat". Good luck and keep us posted!

I don't but I know there have been discussions about Vandy in the past. Lot's of folks have gone for diagnosis and research. Maybe try doing a search if you're up for it....there should be a lot of posts for you to read!

Clonodine is actually a bood pressure med that's been around for quite awhile...so no...it's not a Benzo! I think it's listed on DINET's "what helps" section if you want to check it out. You can also take Benzo's with the Clonodine if needed but I've never had to add them.

Hey Dani...I used to have that a lot too. My doc put me on Clonodine to help relax my sympathetic nervous system. I started at 1/4 a pill and have increased it to 1/2 without any problems. I've been taking it for 4 yrs. now and really don't have any side effects other than some drowsiness (I take it at night). I don't know if this is something you can take with pregnancy but it may be worth asking your doctor about it. If you are able to take it I would start at the 1/4 dose and increase if you need to. It has helped A LOT with those jittery/panic type episodes...I really don't have them anymore. Good Luck and keep us posted!

As far as local anesthetics go just tell the doctor that you can't have any with epinepherine in them. NO EPI!! I've had several procedures with local anesthetics that don't have the epi and did just fine. At the dentist they use carbocaine...but there are others out there. It's actually quite common for people to have sensativities to epinepherine so you shouldn't have a problem getting them to use something without it. Good Luck and keep us posted!

I'm feeling the same way. I KNOW there's something else going on besided the POTS but having a hard time getting answers. My thyroid started going hookey on me about a year ago. Initially the Endo wasn't going to treat me but I was feeling so sick (not just POTS sick) that he agreed to start me on Levothyroxine. I was a bit more stable then last April became really sick again...to the point where I could barley function. Again...it wasn't my "typical POTS" nastiness. My TSH levels were technically normal but I decided to cut my dose in half. That helped for a while...but now I'm starting to feel that sick feeling again. My POTS doc ordered cortisol and ACTH...both of which have come back elevated. So now I'm going to try and go back to the Endo. to see if they have any ideas. I've been on small doses of Florinef for several years and I've taken B/C pills for over 10 yrs now so I don't know if that's what's messing with my hormones or if this could be an underlying issue that's been there for awhile. I've found that over the years I've grown a bit complacent and just attribute everything to this mysterious thing we call POTS. But there are a lot of other things that seem to be coming into play....persistent B12 deficiency, IC, Thyroid, and now cortisol. Guess I'll be playing the what came first game...the dysautonomia or these other things. It is very encourageing that there are some many amazing people on this board that are doing the work for us and searching so dilligently for answers. Keep it up my friends....your efforts are much appriciated!!!

There can be many different causes of swallowing difficulties with different treatments. The procedure Notgivinup is referring to is esophageal dialtation and is used to treat esophageal strictures. The best way to evaluate swallowing function is with a Modified barium swallow study which is conducted by a radiologist and a Speech Pathologist. It's a simple test that shows the movement of food and liquids from the mouth to slightly below the head of the esophagus. There are different types of techniques and treatments the Speech Path. can show you to help depending on the specific problem. If it IS and esophageal issue then you would be referred to a GI for further testing and treatment. Hope this helps! Keep us posted! PS. If you feel up to it; do a search on swallowing. There have been a lot of discussions in the past.

The nurse was showing me how to gage the correct spot on your hip and it was too difficult for me to reach on my own...also if going into my arm I would need help. There's nothing wrong with getting the shots or learning to give them yourself...I would urge people to consult a nurse or Doctor and learn the proper techniques before attempting any kind of injection however!! I've simply found that the sublingual is absorbed well for me and I've no need for the injections any more....Yay!!

I take the sublinqual B12 and it has worked just as well as the shots. My GP was giving me one shot a mth. which did nothing to increase my levels and I was told giving yourself a shot of B12 is more complicated that say an insulin injection...the placement of the shot was too hard to reach on my own. I decided to try the sublinqual and after several mths. my levels are much higher...last check was above 800...so I know it's being absorbed. I've had low B12 levels for years and always thougt the shot was the only way to go so I'm happy that I can rely on the sublinqual now.

Would a PICC line be an option? Or is this not possbile b/c of poor veins? I know they are a little less invasive than Ports. I'm sure there is still a risk of infection but maybe some one here can share what the differences are b/w the two.

Just wanted to agree with the others...get that Gallbladder out!! That is not a "normal" ejection fraction. Mine was actually 4% and the doctor said that typically they only remove the GB when the patient is having symptoms...and you are definately having symptoms!! Good luck and keep us posted!