Poohbear

You may want to see an endocrinologist. Tell them the "typical" thyroid tests come back normal but given your symptoms you want this looked into further. For several years my TSH was "normal" but the Dr's were only testing THAT and since it came back normal they looked no further. Then, I went to a rheumatologist who did some more sophisticated testing on me, including a bunch of antibody tests. My TPO antibody (one of the thyroid antibodies) came back so high off the charts it couldn't even be counted. Every Dr I have seen, including the Dr's at Mayo said they have never seen a antibody as high as mine. So, they started treating me with a low dose of thyroid medication and it helped. My antibody levels continue to be extremely high but they are countable now (which before they weren't) so it's indication that the thyroid was indeed exaccerbating my symptoms. You need an endocrinologist that will thoroughly work this up and try to balance treating labs vs. symptoms.

I don't necessarily get a high heart rate when my bp is low. As for bp dropping when you lie down; that is normal and many peopel will get readings that would be considered too low if they were standing up walking about.

I too have these issues. Haven't found anything that works for me though. Meds haven't helped but still waiting to try Domperidone I am only able to sip 1 cup of chicken broth (takes about 3 hours to get 1 cup down); I can eat a couple spoonfuls of pudding, slow small bites of saltines, toast, rice, mashed potato and italian ice. I am able to drink liquid supplements but I can never get much down at any one time. Have you had any testing done?

This is under the "Mechanisms" of POTS on the DINET Web site. Don't know if it helps you or not Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright (free + sulfconjugated) dopamine levels (Kuchel, Buu, Hamet, Larochelle, Gutkowska, Schiffrin, Bourque & Genest, 1985). Free plasma norepinephrine also tends to be higher in these patients. The excessive dopamine release might be causing natriuresis and vasodilatation, thus contributing to the pathophysiology of this disorder (Jacob & Biaggioni, 1999).

Paige, I'm so excited to hear the vibrance and uplift in your post! That's not to diminish the daily struggles you face because I know those are difficult but I'm sooooo glad to hear you are feeling better in terms of accepting the condition. It's so important to have that family/friend support too. I'm glad your family is seeing you through this in helpful ways. Hang in there and don't be a stranger around here!!

I just get GI upsets, which is common side effect. If you aren't having any other side effects like muscle cramps, GI issues, heart rate changes then I would stay on it and consider that it's more likely that the agitation and anxiety were from some other cause. Of course, if it continues check with your Dr!!

Good point! I agree that more gets done sometimes when you have one large "clearing house" (for lack of a better word) to run things through. To accomplish that though you have to have lots of cooperation and willingness to work WITH people and it seems we haven't gotten to that point yet. In time I'm sure things will improve but meanwhile, we'll just have to scramble around to the various sources to find what we need

Just wanted to clarify...I don't think Nina was saying they are talking about ablation so that doesn't appear to be part of her question. She was saying the Dr is discussing pacemaker to control bradycardia and that if the pacemaker would control the brady then they could increase the beta blocker in hopes of better controlling the tachycardia. I do understand the Dr's line of thinking I'm just concerned that it wouldn't really work that way. I do have a pacemaker and have been helped a lot by it but I'm one of the few who had very clear objective testing that showed my heart rate bottomed out first causing the syncope. The blood pressure drop was secondary but not the actual cause of syncope in my case. Overtime, my body has changed and my autonomic response has changed. I do still pass out some from bp dropping but my pacemaker data clearly shows hundreds of episodes in a 60 day time period where syncope is avoided because of the pacemaker when my heart rate drops too low and my bp is not dropping low all the time. So, I am one of the unusual cases and the pacemaker has helped me a whole lot. My concern for Nina though is from what she writes, the pacemaker may do nothing for her in her case.

Obviously, I'm no Dr. so I can only share my experience. There have been a couple of occasions in my lifetime where I got off beta blockers (for different reasons). Initially I always felt SO much worse but they explained to me that with beta blockers there is a rebound effect. Unfortunately, the only way is THROUGH it. It can take up to a month for the rebound effect to go away to really know if being off the med is "ok" or good for you. I'm guessing your Dr may have increased the other med hoping to off-set the rebound effect a little---totally a guess though and I understand why you would be reluctant to make two changes at once. I also think that it's a bad time to make this change if your body is fighting a virus or cold of some type. Can you wait to do this until you are over the virus?

Hi Nina, Generally speaking pacemakers are not recommended for POTS patients anymore because they now know that in most people it does not improve their condition. However, there are some patients that do see benefit so make sure you get really consults on your case before having surgery. I have a pacemaker and I still have lots of bradycardia (that the pacemaker does control) however, I also have extreme tachycardia that has not been well controlled by medication regardless of the dose. Is it possible for you to consult with one of the autonomic specialists regarding this matter? I would talk to your Dr about changing meds first. I was told by some of the 'experts' in the field that when patients like us get to where we aren't responding anymore to a particular med that their experience is the answer is usually going with a different med not increasing the dose of what isn't working. We talked about how that goes against how most Dr's are trained so we, as the patient, usually have to put our foot down and ask to try something different. Also, you may want to adjust and consider Florinef as the culprit as well. I was on Florinef for 3 1/2 yrs and did "ok" with it and then suddenly I started having all kinds of problems and a horrible flare with symptoms and it turned out my body had gotten so used to the Florinef that it wasn't working anymore and it turns out my body was rejecting the florinef. Have you tried increasing your fluid intake as well? Sometimes the tachycardia gets worse because blood volume is too low and the tachycardia is a compensatory response.

Generally home health agency's do not assist with errands (because insurance only covers nursing care); still you might find someone who is willing to do it for you "on the side" for a little extra income. You may want to call your local aging office. What state do you live in? Are you near a University? If so, you maybe could post something in a university paper about wanting to hire some assistance. In my area, high school students would not really work out because my state laws are strict about who they can have as passengers (generally only family)--this was to try to cut down on teen deaths, drag racing etc. Your local United Way, Salvation Army may also know of resources you could call in your area. There are some companies out there (Home Instead comes to mind) that will provide help with errands but they are expensive.

I think my post was very clear about the fact that I was asking what types of services people would be interested in so that I could both research things to gather the data so that grant funding could possibly be secured. It was also clear about the fact that I had lots of ideas but in order to narrow them down I was trying to find out what the biggest needs of our members was so that any future projects or goals could hopefully be worked toward that. My post stated that without clear plans, proposed budgets etc you can't even think about fund raising or writing grants. If you guys don't want me to pursue any of that then let me know. I certainly don't want to waste my energy. I was only trying to help.

I'm glad you had a positive experience!! By any chance did he discuss the possibility of IVIG therapy with you?

Since your son is still in the hospital and it sounds like they are wanting to release him then I would suggest you talk to the Dr about getting home health care. Check with your insurance to see what coverage you have. Home health care can keep an eye on him and keep the IV's going and they will teach you how to change bags etc. It's really fairly simple; I live alone and managed fine (the only thing I could NOT do was insert a needle but I could take them out if I needed to). However, in your sons case, if it looks like it will be a week or two of IV fluids they may want to place a PICC line. If you don't feel comfortable talking to the Dr then ask for a social work consult....they are usually great at helping to advocate for discharge planning. Also, home health would be much cheaper and comfortable for all of you so if your insurance starts to give you grief have the Dr tell them the option is nursing home or home health!! Good luck and please do keep us posted. Don't give up!! As for Mestinon, I can't help you much on that one because I have tried it several times and it did not work well for me.

Thanks for the replies!! I had thought that most of the reasons FDA hadn't approved this was political and I assumed it was largely because of the breast-feeding issue because it seems that's where the focus is on FDA's website. It's a shame isn't it? I haven't found much on the specifics of the IV risks but felt that because people here had taken it and we hadn't heard horrible things that it must be relatively "safe". (especially since many of us are so sensitive to meds). I think I will talk to my compounding pharmacist because he seems very good at what he does and he's been great at compounding a tiny dose of metoprolol that I can manage. I still worry a little....you know how it is with trying a new med, and since I have mast cell activation syndrome it's a bit tricky but I think the main key is to start with teeny tiny doses.

Welcome!! Be sure to read the info on the main pages. Also check out this link http://dinet.ipbhost.com/index.php?showtopic=1954 You can also do a search for lots of terms and read up on the previously posted info. As for the cymbalta--some people benefit significantly with cymbalta and similar meds so it's definately worth a try.

So glad you are feeling a bit better and that the GB removal is over with for you. Hugs to you & don't push yourself to do too much too fast!!

For those of you who said you would like to see more advocacy/liason between Dr. and patients.... What are your ideas and thoughts about that? What types of things/services do you think would be helpful? I'm asking because I have some ideas but this is a "wide open area" and I don't know if my ideas would fit with your needs. I want to make sure that any ideas/plan I come up with would meet those needs so please chime in. I have lots of ideas for the education aspect as well, I just need to narrow it down some. I'm sure many of these things will come in baby steps. Thank you SO MUCH for all of your input!!!

I hope you all don't consider this off-topic. This is more a question for those of you who battle with gastroparesis but for many of us that cause is most likely a result of the same problem that causes all our other autonomic dysfunction. Anyhow, If any of you are on domperidone or have tried it would you mind sharing your experiences with it? I am to the point of getting set up to try it but my GI Dr's are nervous about it because they don't understand the autonomic dysfunction. I am highly sensitive to meds and am a bit concerned because of the FDA reasons for not approving this med in the U.S. (being cardiac problems). I do recognize those concerns are around IV forms of the drug though. Is this a med that should be treated like many of the others we try in that we should start out with smaller doses than the "typical" recommended? What side effects have you had with the med? I know you all aren't Dr's....I'm just looking for what your experiences have been with it. Thanks!!

I get this too. If it's something new please make sure to mention it to your Dr. There are some serious things that can cause this type of sensation and you want to make sure they have been ruled out. Aside from that, obviously I'm no Dr., but I don't know that this symptom is from dysautonomia directly. Statistically speaking, it is MOST likely to be a muscle spasm (in this case either of the small bowel or the intestines based on where you describe it). But again, do have it checked out. Sometimes a warm, moist compress will relieve it if it's muscle spasms.

I'm sorry you had such a horrible experience with the Dr!! Seems we all run into lots of bad experiences in dealing with this chronic condition (I know that doesn't make you feel better..just want you to know you aren't alone). Regroup your energy and focus and stand your ground until you get the help you need. Would it help if you printed some info from this site or pub med or somewhere else to take in to your Dr? Hope things improve for you!!

I also have trouble after eating but not to the extreme you mention. If I eat (sometimes even a very small portion) I definately get presyncopal. I also seem to get the opposite reaction from most people with this type of trouble....they tend to get postprandial hypotension but I get severe tachycardia and hypertension. Nibbling throughout the day does help me some. If you are able to, you may also want to try eating a very small portion and reclining in a chair (try not to lay down because that will slow digestion even more and possibly give you problems with reflux). Maybe between reclining to help keep blood flow toward your upper body and eating small amounts will give you some relief. The only other things I can think of to rule out would be making sure you aren't having food sensitivities or allergies (these can sometimes bring on autonomic symptoms) and making sure you have ruled out diabetes or hypoglycemia problems.

I agree with everyone else.....I think this is a common experience in folks like us. I don't have a good answer for you though because I know a scared child in the middle of the night is not something you can "slowly" go to. I used to have these types of spells every time my alarm clock would go off; I finally made the connection that the loud jolt was too much for my body and now if I need an alarm clock I set it to soft music so I don't get the horribel adrenaline rush. I still get the way you describe if there is a loud, sudden noise...daytime or nightime.

OC Sunshine If you are wanting to be tested for celiac that's actuallly pretty straight forward blood test. Ask your Dr to run that for you.

Sorry you are feeling so yucky!! I do not get the tapping on the head but I do sometimes feel like my arms and hands don't want to work right and sometimes they kinda feel like they want to go numb. Like they are somewhere closer to being numb but not totally numb. Hope this passes soon for you!